Parent Directory
Welcome to the NAPVI Parent Directory Online! We have set this
area up as a place where parents, grandparents, guardians and others can list some
personal information to provide an online "network" of support and information.
The registration form will give you an opportunity to
provide information for use by others with children who are blind or visually impaired.
This information will then be listed on this page for others to view - giving all a chance
to share their experience and resources, and perhaps provide some emotional and moral
support.
Listing on this page is entirely voluntary, and the information
will in no way be used outside of these pages.
Until we can set up an "automated" form posting system
we will have to manually add your information to this page (this is usually accomplished
shortly after we receive the information) - please allow for some time until your
submission is available to others. As always, we
welcome suggestions as to how to improve this site for all. (Parent listings are in
alphabetical order by state--international listings follow the state listings.)
Click on your state to jump directly to it on this page.
Your state not listed? Please fill out the form!
My name is Steve Reaves. My wife Tasha and I have three children:
Stephanie, Katlin, and Ashley. Stephanie was born in June '99. In August she was diagnosed
with Microcephaly. I do not know the extent of her visual impairment. I'm 34 years old and
work as a realtor in a small town in Marshall County. You may contact me at stevereaves@bellsouth.net
My name is Darlene Cox. My husband is Terry. We live in Prattville, AL
with our four children. Having triplets is an experience in and of itself, and Caitilin,
Courtney and Cassidy were all born on 12/31/99. We are raising Courntey (who is blind due
to ROP) just as we have raised our son Chris, who does not have any visual impairments.
(Caitilin and Cassidy have low vision.) As a result, Courtney is more independent and
outgoing even at age 4. I welcome the opportunity to share thoughts and ideas on educating
blind children in the public school system. You may contact me at darlenedcox@charter.net
My name is Rebecca Emison. My daughter Kayla will be five in December
2004 (born 12/23/99) and was a 29 week premature baby and also growth restricted. She
weighed 1 pound 1 oz at birth. She was diagnosed with ROP soon after birth and underwent
several unsuccessful surgeries leaving her with no vision in her left eye and only light
perception in her right. We also just found out two weeks ago that Kayla also has
significant hearing loss and will be receiving bilateral hearing aids tomorrow. Kayla also
has a 20mo sister (Madison) who has no disabilities. My husband Michael is active duty
military. We are currently stationed in Alabama. I could really use advice and support and
may be able to offer the same. You may contact me at rebeccaemison@yahoo.com
My name is Nakie Fuller. I am a single parent with
three children. My son Davon (10/25/04) was diagnosed with retinoblastoma (cancer of the
eye) which caused him to lose his left eye. You may contact me at mary5504@aol.com
My name is Melissa Ward. My husband Chris and I have two children,
Maureen (10/18/93) and Mary Grace (11/23/98). Both of our daughters' have cone dystrophy
and nystagmus, their corrected vision is 20/100 and 20/200. I am a registered nurse and
the mother of two precious daughters who are very active and do not view themselves as
disabled. You may contact me at mlward96@yahoo.com
My name is Chandra Schutte. Together with my husband Joe we have two
sons, Devon, born 2/9/96 and Ryan, born 5/7/03. My son Ryan was born with bilateral
anophthalmia. We are fortunate that he has no other developmental delays. He started
walking at about 18 months old. He is such a happy boy and he has really helped to bring
our family together. You can contact me at schutte1996@yahoo.com
My name is Virginia Elliot. My son Kristopher has Peter's Anomaly. He
can see light and shadows out of his left eye, but he cannot see anything out of his right
eye. He has had 5 corneal transplants. I am also visually impaired--I have Peter's Anomaly
as well. I am a recent graduate from college. I graduated with an AA degree in Liberal
Arts. You may contact me at jasmine5802@hotmail.com
My name is Jennifer Houch. My daughter Danielle (10/6/99) was born
with coloboma and microphthalmia in both eyes. She has very little vision in her left eye.
I'm a single mother working full time as a pharmacy technician and going to school full
time to become a V.I. teacher. We live in Orange, CA and you may contact me at dopey4711@aol.com
My name is Carolyn Germino. I am a single mom, raising three kids, and
working full time. I don't do much else than that. My children are Vanessa (3/29/85),
Michael (5/26/89), and Joseph (12/15/92). My son Joe experienced some hypertensive
encephalopathy of unknown origin. He later had a stroke because the doctor's couldn't
bring his blood pressure down. This happened in October '03. He was in PICU for about
three weeks in a drug induced coma. So the stroke wasn't even confirmed until after that
period, because it was too risky to transport to do an MRI. He spent 2 and half months in
the hospital. Progress wasn't good. He couldn't walk or talk or eat. But once he was
released from the hospital in January '04, he began to improve. He is now walking, talking
and eating. However, he is still unable to see very well. He makes out colors pretty well
at times, and movements, but cannot recognize objects. I'm still hoping his condition will
improve over time. You may contact me at rolita_gordita@yahoo.com
My name is Rosalba Beltran. I am a 30-year-old single mother of two,
ages 5 and 7. I am a full time student, working on an RN and currently holding a part time
job. When my youngest daughter Maria was born (10/29/98), I noticed that her right eye was
smaller than her left. When I asked the pediatrician on duty about it, he told me that it
was nothing to be alarmed about and informed me that most "ethnic" babies
appeared to have one eye smaller than the other due to the wide bridge of their nose.
Later, after insisting that there was something wrong with her eye (after 5 months) we
were told that she was born with an underdeveloped eye and that at the most she could see
was black and white light. We've seen doctors from the University of New Orleans Eye
Clinic who informed us that there was scarring present in her eye, and the doctors from
Lucille Packard's Children's Hospital basically told us that there wasn't much that we
could do about her eye. When Maria was 1 years old Lucille Packard's doctor told us that
when Maria's eye was developing, she developed a growth that wrapped itself around the
optic nerve, pulling the retina to the side. It would do more damage than good to remove
the growth at the time because of her size. Maybe later on in life she might require
cosmetic surgery to correct the "lazy eye" appearance in her right eye, but that
was about it. She has a cataract that is very visible in the same eye, but the
ophthalmologist said that there is no point in removing it since she does not have vision
in it anyways. Not a single doctor we have seen to this day has ever mentioned Peter's
Anomaly. I have just been reading about this on the Internet. I am seeking any
information regarding my visually impaired daughter's condition and I am open to all
suggestions and advice. Please contact me if you can offer anything at all at a_lil_sunshine74@yahoo.com
My name is Rachel Demicco. I have two children, Anthony (2/11/01) and
Victoria (3/14/94). Anthony was born prematurely and has ROP because of that. He has been
determined legally blind. He also has gross and fine motor delays, and speech delays as
well. I am 29, and am myself disabled with Lupus and I am trying to advocate the best I
can for my son. You may contact me at rdemicco@comcast.net
My name is Shellie Hirsch. My husband Craig and I have 3 children,
Corey (9/10/89), Dyland (8/11/91), and Adam (10/9/95). Adam has Septo Optic Dysplasia. He
sees lower left out of his left eye. He is blind in his right eye. He is also
pan-hypopituitary. I am a stay at home mom. I worked for children's mental health until
recently, when Adam was put on home & hospital. You may contact me at shelliehirsch@comcast.net
My name is Christie Goldenberg. My husband Evan and I have two
children, Hannah (4/7/97) and Josh (1/24/04). Josh was born with bilateral microphthalmia.
His right eye is missing and his left eye had to be removed last August due to glaucoma.
He now has his first set of prosthetic eyes. My pregnancy with Josh was a surprise and his
condition was a huge shock. At 3 weeks old we found out that the optic nerves had not
fully developed and he was blind. I am learning everyday how to be a good advocate and
teacher for Josh, he is such a blessing. You may contact me at hgolden2@sbcglobal.net
My name is Stella Davis. My husband Mike and I have two very happy,
active boys: Ben (7/27/00) and Daniel (4/13/05). Daniel was born with Norrie's disease. He
has very small eyes, bilateral detached retinas and will most likely lose his hearing as
he approaches adulthood. He has already had two surgeries to remove the lenses and clean
up scar tissue in each eye. H will be having yet another surgery next week to remove more
scar tissue in his right eye. We both work full time and don't feel that we have near
enough time to spend with our little men. You may contact me at imstell@yahoo.com
My name is Lori Schwarm. My husband Billy and I have three children,
Makaila (5/20/94), Dakota (11/7/00) and William (2/1/03). Wiliam was born with bilateral
colobomas. He is just two years old. I want to know more about coloboma and how children
his age (and their parents) have coped with this. You may contact me at lschwarm_2000@yahoo.com
My name is Margaret Buttery. I have two children, Marrie (5/12/04) and
Joe (9/17/01). Joe was born with congenital third nerve palsy in his left
eye, and his right eye has a rotary nystagmus... although there is a debate whether his
right eye has true nystagmus. The bottom line is that his right eye is constantly rotating
and his opthamologist believes he has approximately 20% visual input compared to what
others see. His left eye has restricted vertical and horizontal movement and a constricted
pupil. He is 20/30 with glasses, but has limited visual fields and little periperal
vision. His sister's eyes are fine - although she might end up being nearsighted like her
parents. I'm a full-time mom and part-time teacher. My uncle also had some severe
strabismus or some other type of visual problem, but he passed away in WWII, so we're
really unsure what his diagnosis was. Apparently, he was able to see well enough to be in
the army, but he certainly had very thick glasses. You may contact me at margaretabuttery@yahoo.com
My name is Frank Madrigal. I have two children,
Joshua (2/31/96) and Julianna (7/24/01). Julianna was born blind. We noticed
that she wasn't able to focus on anything. Upon further tests and doctors
visits, she was diagnosed with Lebers Congenital Amaurosis. I am now divorced
and we split custody 50/50, so whenever I have the children it's always special.
Meaning that nothing else gets in the way of our time! We live in Stockton, CA
and you may contact me at frank22h2o@aol.com
My name is Katie Finger. My husband Paul and I have
one daughter, Avery (5/21/02). Avery had a brain hemorhage at three days
old resulting in multiple delays and Cortical visual impairment and strabismus
caused by a hemorrhagic stroke of the posterior part of the brain, most severely
affecting the visual cortex. This means that vision is limited by damage to the
brain, not to the eyes. She is legally blind. Yet, she is doing amazingly well
for what she has been through. My children are my
life. I do everything for them. I want to find ways to help Avery and learn more
about her condition. You may contact me at
ktdidoo@hotmail.com
My name is Lori Garcia. I am a single mother of twins, Codi and Trevor
(10/4/89). They were born with bi-lateral retinoblastoma and were diagnosed at 4 months.
Trevor had both eyes removed and Codi had one eye removed. At age 1 Codi went to CHLA to
see Dr. Murphree and was one of the first children in 1990 to receive laser/chemo
treatments to save his remaining eye. This worked after 4 rounds of this treatment and he
has a visual impairment in his remaining eye. I am 44 years old, live in Colorado, and am
always looking for new information to share with others. I appreciate any and all
resources any might have in my situation. You may contact me at sixsenough2001@juno.com
My name is Cathy Burke. My grandson, Kollin (1/24/03) has Septo Optic
Dysplasia. He is blind with possibly some light vision in the corner of his left eye.
Kollin, my daughter (his mom) Megan and my husband all live together, so I have a lot of
interaction in his life. I do whatever research I can and talk to whomever I can to get
any information available that would be helpful to Kollin. Besides and due to his visual
impairment, Kollin also has tactile defense syndrome (sensory issues) and eating and
feeding problems. He currently receives speech therapy, feeding therapy, occupational
therapy and physical therapy and is attending a daycare facility who's population is made
up of 25% handicapped children (various handicaps). He is a wonderful, happy child, but I
would love to talk to others who have children with sensory and feeding issues in
additional to a visual impairment. You may contact me at neriver@aol.com
My name is Dianna Vaughn. I am the mother of a family that includes my
husband, Steve, and our children Kyle (dob 12-18-87) and Autumn (12-18-81). We reside in
Gainesville, Florida. Additional info about Kyle - Kyle was born 3 months premature. He is
visually impaired due to retinopathy. He also has 1 retina that detached when he was an
infant. He also has ADHD and severe dyslexia. An introduction - I am a RN who is now a
stay at home Mom. I am an active advocate for special needs children and actively work at
improving special education in my area. I am also the President of a local Parent to
Parent group.
You may contact me at advocate@atlantic.net
My name is Amy Henderson. My son Chance was born on 9/26/03 and he has
Septo Optic Dysplasia. I am just a mommy looking for all of the information I can find to
help my child be the best that he can be. We live in Jacksonville, FL.
You may contact me at momtks@hotmail.com
My name is Theresa Jones. My husband Michael and I have 6 children:
Michael (1/12/96), Susan (4/26/86), Thomas (10/9/87), Robert (2/25/90), Caitlin (12/6/94),
and Lianna (9/8/99). Michael is a fun 8 year old. He was born with a bone disease called
Osteopetrosis which caused him to become visually impaired. Michael has been diagnosed
with Optic Nerve Hypoplasia. Michael has broken many bones due to his condition, but it
doesn't slow him down. He began learning Braille at the age of three and does well. He is
such a smart boy and has so many dreams when he grows up. He loves to be read to. His
favorite books are the ones about airplanes, books, firefighter and war books. I have been
working as a Counselor Assistant in residential treatment for the past five years.
My husband is a jet engine mechanic. We have recently made a move from Alaska to Florida
with my husband's job. We are learning about the programs in Florida and what there is for
Michael and his future. The programs in Florida are so different from the ones in Alaska.
We are learning as we go and only want the best for Michael. You may contact me at tjones4781@aol.com
My name is Iris Fletcher. My son Leon was born on 4/26/93 with
bilateral Retinoblastoma. I live in Miami, FL and own a coffee shopo in one of our main
libraries. I am proud to be in this library because this is where the Talking Book is
located. I am working with the staff here in educating them on other things that are
available to our children with visual impairments. I'm also in the process of trying to
open a FFCVI chapter here in Dade and Broward County. You may contact me at bcrative45@yahoo.com
My name is Jennifer West. With my husband Greg we are the happy
parents Jackson (8/17/04), a preemie born at 26 weeks! Jackson sees bright sunlight and we
are working everyday with light therapy to improve what vision he has. Being such a
preemie, we are lucky he is doing so well. You may contact me at jbw2000@att.net
My name is Theresa Mouser. My husband Andrew and I have three
children: Christopher (11/11/95), Kaitlen (2/24/98), and Macenzie (12/3/99). Macenzie was
born with bilateral colobomas and microthalmia with cysts in her right eye, she also has a
partially detached retina in her left eye. I am a stay at home Mum, and I have had to
fight hard to get Macenzie services that she requires for her special needs. We moved to
Florida's Fort Walton Beach from Germany, as my husband is in the military, so it is hard
to find continual good doctors, but I'm hoping this will be our last move. You may contact
me at tjw_m@hotmail.com
My name is Steve Smith. My wife and I have three children: Stephanie,
Kenan, and Ty, and all three of them were born with retinal detachment. We live in
Jacksonville, FL. I am a deputy sheriff and my wife is a stay at home mom. You may contact
me at SJSOJailer@aol.com
My name is Betty Boga. My son Kyle
(8/13/94) was diagnosed with FEVR at age 9. After 2
surgeries for retina detachment on his right eye he has lost vision on that eye.
Now 6/06 we are on our 2nd surgery on his "good eye" left.
First surgery for a macular hole and now for a tear in his retina. His
vision at this time is 20/200 on the "good eye" but we are told that his eye
seems to be following the path of his right eye and the possibility of complete
blindness is being considered. I am a mother of 5. I
have volunteered with the BSA until recently. Now I am
focusing on taking care of my youngest son's illness. You may
contact me at bboga@bellsouth.net
My name is Silvia Bowen. I am the mother in a family that includes
dad, Bruce, and our children Emily (dob 2/20/92), Sarah Lynn (dob 1/7/97) and Joseph (dob
4/9/97), all living in Atlanta. An introduction - I am a stay at home mom. I am active on
the internet. I would like to start a mail list for all parents of VI/Blind kids. Ideally
this list will forge friendships, exchange ideas, tips concerning every day activities,
educational needs. You may contact me at emslay@ix.netcom.com
My name is Sillita. Together with my husband John we have one child,
April. She's currently 16 months. January 31st 2003 John and I were informed that our
beautiful baby girl had a brain tumor "Optic Glioma" other than a slight
nystagmus "shaking of the eyes" she was a healthy, jolly, bubbly little stinker!
One would have never known that she has a ticking time bomb in her head. April had brain
surgery at 11 months, March 14, 2003 and lost her vision that very day. The tumor had not
been removed, because of its location, it's embedded in her optic nerve and the decision
was made to leave it be, since removing it would render her permanently blind. Leaving it
as is, will offer her a chance for sight with chemo and radiation when she gets older.
Unfortunately, April has still lost her vision. Currently our second home is the hospital,
she is currently on chemo, weekly and seizures are a part of her life now as well as a
variety of medications and MRIs. However, through it all she's a little fighter, she is a
smart little girl who has taught me a lot more about "ME" than I've ever learned
on my own. She is our little angel. I am an international flight attendant and my husband
is in the military. We've just relocated to Georgia as a result of my husband's new
assignment. Unfortunately we have no family here and meeting friends has become very
difficult because April's blood count has been so low lately the only visitors to our
house are her O/T and P/T. We would love to have a few friends for our daughter to play
with and we would just love to have folks to chat with PERIOD! Please feel free to share
your stories with me at ccaribqueen777@aol.com
My name is Julie. My wonderful son Trenton (born 6/1/03) was born with
bilateral Peter's Anomaly. We were blessed and it did clear up for him in his right eye
but his left eye is still affected. He has had a cornea transplant and we have recently
found out he may have glaucoma in his eye, possibly both. He will be having surgery to see
and if they need to do anything they will do it then. I am a stay at home mom with a
wonderful husband and son. Our son is the best thing that ever happened to us. The
rollercoaster is difficult at times, but we try to stay positive and remember he has his
health. We live in Georgia, and you may contact me at juelsb@hotmail.com
My name is Aimee Alexander. My husand Marc and I are raising two
girls, Lindsay and Melanie (8/3/97). Melanie has retinal dystrophy and possibly RP. Her
diagnoses is still uncertain and the doctors don't think they will know for sure until she
is much older. The prognosis is uncertain at this point, but she is currently 20/100 with
glasses and has night blindness. She is currently 8 years old and is learning to use low
vision aids. She will start learning Braille in January. Her older sister is 11. She is
extremely near-sighted and has congenital stationary nightblindness. We live in a suburb
of Atlanta. Melanie has worn glasses since she was 6 years old. She has had several eye
surgeries to correct muscle problems (unrelated to the retina issues). Her doctors agree
that she has some form of retinal dystrophy but no official diagnoses has been made. She
is learning to use the computer, along with low vision aids and Braille. We feel lucky for
several things. First, Melaine is extremely adaptable and is opent to learning how to help
herself. Next, Melanie is able to see pretty well (up close, with magnifiers, etc.).
Finally, the public school system has been very helpful. No one can predict the rate or
degree of vision loss that Melanie will experience. You may contact me at aimee_alexander05@hotmail.com
My name is Melissa White. My son, Joshua, will be 4 in
August. He was diagnosed with XLRS just before his 2nd birthday. At this time, his
corrected vision is approx 20/70 in the left eye and 20/200 in the right eye. His right
eye, however, is his best eye because the retinoschisis is worse in the left. Therefore,
he has almost no central vision in his left eye. He seems to do pretty well getting around
and functioning in every day life. He is about to start 4 year old kindergarten, so we
will just have to see how that goes. I am a registered nurse and the mother of 3 boys.
Joshua, the youngest, we know to have XLRS. Johnathan, my middle son, does not appear to
have any visual impairment other than mild myopia. My oldest son, Kevin, drowned at age 12
in a large lake. He was highly myopic, but was never tested for XLRS. We still believe
that his low vision played a factor in his death. You may contact me at twokidsandus@tds.net
My name is Susan Peppers. My husband Mark and I have
one son, Scott (2/12/94). Scott has Stargardts Type 3. I am looking for help in
understanding his disease and for any kind of treatments. You may contact me at speppers12@bellsouth.net
My name is Mireya Kimbell. I am a single
mother of 5 yr old twin boys who continues to try to locate resources that will
help my childrens' visual impairment. I am currently looking into schools that
provide smaller teacher/student ratios in my area. Kameron & Kolton are 5 years
old (11/27/00) & were born @ 24 wks gestation &
weighed only 1lb 8oz. & 1 lb 13oz. They both developed R.O.P as a result of
severe prematurity & extended periods on oxygen. They have both undergone the
following surgeries: laser therapy, cryotherapy and vitrectomies. In addition to
R.O.P., Kameron also has amblyopia in his right eye but has benefited greatly
from occlusion therapy (atropine drops). Kolton's R.O.P. is more severe. Kolton
also has nystagmus and strabismus and has been referred to as legally blind.
Kolton began learning Braille this year. Both boys also show signs of learning
disabilities however both of them are as active as any 5 yr. old. They are both
enrolled in special-ed PreK & receive visual & speech therapy.
You may contact me at
mireyakimbell@bellsouth.net
My name is Kim Dumalag-Barnhill, I
am married for 10 years (to James) working mother of 4 (Anthony, 4/3/86; Clayton, 5/14/89;
Jessica, 8/17/96; and Jeremy, 11/29/98) with a 17-year-old blind son who was born at 26
weeks, he has ROP (Retinopathy of Prematurity). I would love to reach parents in Idaho who
have children with visual impairments and network together. We live in Gooding, ID, and
you may contact me at mimicrzy@hotmail.com
Hi, my name is LeAnne Jackson. I live in Idaho with my husband Kevin.
We have three children,
Maggie '97, Heidi, ’01 and, Alexander ‘05. Heidi and Alex both have Leber's
Congenital Amaurosis (LCA). They are both farsighted, have nystagmus and wear
glasses. They are both doing well. It has been an interesting journey but I
would not trade it away for anything. Kevin works for
a computer company and I am a full time mommy. I am always eager to meet other
parents of kids with visual impairments, especially in Idaho! You may contact me
by clicking on my name above.
Hi, name is Camille Tolley. My daughter Kendal (2/18/03) has Optic
Nerve Hypoplasia. I am a single mom and we live in Coeur'd Alene, Idaho. You may contact
me at amandahaller@earthlink.net
My name is Claudia
Fabián, NAPVI region 3 representative. I am a single mother raising an
almost 12 year old son, Auggie. He was born with microphthalmia and colobomas in both
eyes. We were always told that his condition will never improve, nor get better. Well, as
so many of us know by experience, they were wrong. The last two months have been very
difficult, because we have been searching for answers, since Auggie said, very casually,
that he felt he was seeing less than before. We have our answers now, but the probability
of losing the sight completely is high, so the news was not the best. But, we will deal
with that when the time comes. Auggie is a very strong and resilient kid and I am very
proud of him.
I wanted to share with you this recent experience, because it reminded me of the power
of support, especially from other parents who "have been there". For me, in
these last two months, this support has been unbelievable and very comforting!
So, today I wanted to say that I am here and that we can talk, anytime. There is a
bonding between us, already, even though we have not met yet. Please call me or e-mail me,
I want to be there for you, as so many of you have been there for me. My e-mail is lelis7@hotmail.com and my phone number is 217-524-5848.
Mi nombre es Claudia
Fabián, representante de la región 3 de NAPVI, y soy la madre de Auggie, el
cual ya tiene casi 12 años. Nació con microftalmia y colobomas en ambos ojos. Siempre se
nos dijo que esta condición nunca mejoraría, ni empeoraría. Pero, como tantos de
nosotros sabemos por experiencia, estaban equivocados. Los últimos dos meses han sido muy
difíciles, porque hemos estado buscando respuestas, desde que Auggie, en forma muy
casual, dijo que creía estar viendo menos que antes. Ahora tenemos las respuestas, pero
la posibilidad de que pierda toda su visión es alta, así que las noticias no fueron las
mejores. Pero, nos ocuparemos de eso cuando llegue el momento. Auggie es un chico muy
fuerte, tiene una gran capacidad de recuperación y estoy muy orgullosa de él.
Quise compartir con ustedes mi experiencia reciente, porque me recordó el poder del
apoyo, especialmente el de otros padres que "ya han pasado por eso". Para mí,
en los últimos dos meses, este apoyo ha sido increíble y muy reconfortante!
Así que hoy, quiero decirles que aquí estoy y que podemos conversar, en cualquier
momento. Hay una unión entre nosotros, aunque aun no nos hayamos conocido. Por favor,
llámenme o mándenme un e-mail, quiero estar allí para ustedes, tanto como muchos de
ustedes han estado allí para mí. Mi dirección de correo electrónico es lelis7@hotmail.com y mi número de teléfono es
217-524-5848.
My name is Sara Mehrkens and Todd and I have been married for 11
years. I am a labor and delivery nurse and my husband owns his own business as a
carpenter. We have four children (the three oldest are 8, 6, and 4) and Elijah is our
fourth child. He was born with anophthalmia in the right eye and microphthalmia with a
large coloboma involving his optic nerve and macula in the left eye. We live in Minonk, IL
and you may contact me at merk5@mchsi.com
My name is Shannon Sterrett. My husband Jim and I have one daughter,
Samantha, born 7/15/98. Samantha was diagnosed with Optic Nerve Hypoplasia (ONH) when she
was 10 months old. She was also misdiagnosed with Pervasive Developmental Disorder back in
11/01. You may contact me at
mouse022771@comcast.net
My name is Maradith Hada. Together with my husband William we have two
children, Damien (7/8/97) and Trevor (11/7/02). Trevor was born with bi-lateral aniridia,
foveal hypoplasia, left esotropia, and he also has uni-lateral, mild PVL and CP and
developmental delays. We live in Illinois, and I work full time as a CNA. I am looking for
other parents of children with aniridia to e-mail with. You may contact me at dandtsmom2@hotmail.com
My name is Lori St. Arnaud. My husband Lee and I are first-time
parents to our child, Patrick (4/7/05), who has Lebers Congenital Amaurosis. We are
seeking to connect with other parents of Lebers visually impaired children. We're also
seeking advice and tips for assisting the development of a visually impaired child. You
may contact me at
loristarnaud@yahoo.com
My name is Annie Karrick. My son Nolan (4/12/06)
was born with colobomas in both of his eyes. In his left eye, it is the iris,
retina, and optic nerve. In his right eye, it is in his iris and retina. My
husband Michael and I have been married almost four years. I am a human
resources professional, and he is a logistics professional. We live in Hanover
Park and Nolan is our first child. I am looking for other parents who have been
managing this condition so I can share stories and learn more. You may contact
me at anniegirl56@hotmail.com
My name is Karen Waugaman. I am the grandmother of Jewelia, who is 2
months old. We just found out she has optic nerve hypoplasia. Her mother (my daughter) is
just 18 yrs old. I have a wonderful family, everyone has been just great about their
support. I am looking to talk to as many parents/grandparents about how to help my
daughter through everything she must deal with. We live in Hammond, IN. You may contact me
at pwaugman@prodigy.net
My name is Nanette Hembree. I am the mother of one, Tanner, who has
ocular albinism/nystagmus. His vision is 20/200 (non-correctable). I got remarried last
July. Up until then, I worked for a local bank in the data processing area. I quit last
October to be more available for my son. I currently work in an assisted living situation.
My husband and I are interested in learning more about my son's disabilities and related
behavioral problems. We live in Loogootee, Indiana. You may contact me at nmichellehembree@msn.com
My name is Jennifer McBride. My husband Daren and I 5 four children:
Cassandra (7/10/89), Joshua (12/22/93), Allison (10/12/95), Madison (10/12/95, deceased),
and Jacob (6/21/97). Jacob has a very strong eyeglass Rx and sees about 20/400 with his
spectacles on. The doctors say that there is nothing that can be done for him and are not
sure why his eyes are getting worse. My husband and I have taken him to 4 different
specialists and have gotten no answers. He has a vision therapist that makes
accommodations in his classroom. I am a 31-year-old stay at home mother. Madison passes
away from difficulties of Goldenhar Syndrome. My husband is a computer programmer. You may
contact me at madisons@osage.net
My name is Debbie Dovel. My husband Charlie and I have two children,
Megan (8/16/83) and Chad (6/03/89). Chad has a rod/con dystrophy similar to Macular
Degeneration of both eyes that was discovered when he was 7 years old. He has been legally
blind since he was 8. His vision has deteriorated gradually over the years, and now at 15,
he mostly only retains some peripheral vision in his left eye. We live outside Hamburg, IA
which is in the far southwest corner of the state. Right now, I am unemployed, but have
worked in several office positions over the years and also at the public school my son
attends here. My husband is the service manager at the local John Deere dealership. We
have been married 23 years and our daughter Megan, now 21, is a senior in college in
Missouri. She is not visually impaired. My son Chad is going through a very difficult time
now as a teenager. I would like to hear from other parents with visually impaired
teenagers that are attending public schools. You may contact me at cddovel@heartland.net
My name is Jill Craun. My husband Lonnie and I have three children,
Brittany (12/96), Jake (7/95), and Zach (7/94). Zach has congenital optic nerve atrophy.
His visual impairment is 20/100 in both eyes with glasses for nearsightedness also. He was
diagnosed at 5 years of age after seeing many specialists. I am a part-time administrative
assistant at our church. Lonnie is a quarry construction worker. You may contact me at ljcraun@hotmail.com
My name is Angela Blakley. I am a stay-at-home mother of two, Ciera
born 8/11/97 and Collin, born 9/7/01. Collin has Bilateral Colobomas. He was born with a
series of birth defects, all of which we have corrected we believe except for his eyes.
I'm looking for more information on his eye condition, and hoping to know others who are
dealing with the same issues. I have tried to work outside of the home but Collin just
won't have it. It seems he goes downhill when I leave and regresses on his treatments to
his other problems. We live in Overland Park, Kansas. You may contact me at blakley11@hotmail.com
My name is Libby Hostetter. Together with my husband Andy we have two
children, William (8/19/1991) and Jay (2/9/1989). William has early onset Retinitis Pigmentosis. I am a working mom, living in Kansas and having a hard time navigating the
world of having a visually impaired child. You may contact me at alhost2003@hotmail.com
My name is Kyra Nistler. My husband Mark and I live in Kansas. Mark is
retired Army. We have two children, Hannah (12/10/91) and Sarah (2/15/94). Hannah was just
diagnosed with Retinitis Pigmentosa. She has 20 degrees visual field in her right eye and
10 degrees in her left eye. Both my husband and I work outside the home. We are struggling
to help our daughter with this new diagnosis. You may contact me at kyra.nistler@sbcglobal.net
My name is Amy Fries. I am a mother of 2 children, my 2nd child,
Janelle (2/10/96) was born with bilateral colobomas. The right side involves the optic
nerve, and both irises are affected as well. I have been working to try to protect her
vision. You may reach me at frieam05@hotmail.com
My name is Jill Wagner. I am mom to
Blake (9/17/00) and Tucker (2/23/02). Tucker has complete vision impairment as
the result of a brain tumor. Tucker has bilateral
optic nerve atropy resulting in complete vision impairment secondary to a brain
tumor. He was diagnosed at age 15 months with a crainopharyngioma which grew
around his optic nerves causing the atrophy. He suffered low vision with many
changes from June '03 until Dec '05. At that time he had a final surgery (we
hope) to remove the tumor. The optic nerve suffered damage during the surgery
and resulted in the loss of the rest of his vision. I
am now exploring the world of raising and educating a visually impaired child.
Any help and encouragement I can either give or receive would be wonderful. You
can reach me at
jillwagner21@hotmail.com
My name is Anita Collins. I am a stay-at-home mother of 4 (Cody,
Megan, Jacob and Abby). My youngest child Abby was born with cataracts. She will be 2 in
July, and I am looking for other parents to talk to. You may contact me at codyd@mikrotec.com
My name is Shannon Purcell. Hi! I am a parent of a 5-year-old daughter
(Morgan, born 10/8/98) who has a cataract in her left eye, which impairs her vision. I am
contemplating surgery to remove the cataract, but I want some feedback from other parents
who have been in the same situation. We live in Falmouth, KY and you may contact me at spurcell@fuse.net
My name is Amy Cooper. I am a stay at home mom with 3 kids. My oldest,
William (4/13/98) was born with glaucoma and is now a 7 year old child in the 1st grade.
His younger sisters are both healthy young girls. You may contact me at amie718@earthlink.net
My name is Kristine Hedtler. I am 42 years old, married to Ed and
mother to three boys, Jonathan (10/20/84), Justin (7/11/88), and Dylan (11/5/86). I work
part-time at a law firm (after having worked full time there for 13 years). My son Dylan
was diagnosed with Usher Syndrome, Type II in 2000. He had been diagnosed
as hearing impaired at about the age of 3, so has worn hearing aids from that time on. I
volunteer at The Iris Network in Portland, ME as a "reader" of a daily newspaper
for broadcast to the blind/visually impaired. I am going through a really tough time right
now. Dylan will be a senior in high school this coming year. He is very bright,
intelligent, and socially adept. The problem is, I believe, he is still in denial that he
has these issues. He refuses to wear more than 1 hearing aid, he refuses to wear his
sunglasses when outside (sunglasses help with the transition from bright sunlight to
indoor lighting as he is almost completely blind for quite a while when making that
transition). Is there anyone out there who could give me some first hand suggestions on
how to deal with a hard of hearing/visually impaired teenage boy? I am at a complete loss.
I get all sorts of "helpful suggestions" from parents, teachers, family members
on how to "deal" with Dylan...but no on really know how it feels to be THE MOM.
You may contact me at kdjje@msn.com
Hi, my name is Jessica Perry. I have two handsome young sons named
Robert (3/5/98) and Tyler (12/20/98). Robert was born with Optic Nerve Hypoplasia and a
mild case of Septo-Optic Dysplasia. I am originally from Massachusetts, but have recently
moved to Maine. I am very interested in networking with other parents, especially with
children with the same impairment, to compare learning styles. Maybe you know a better
way! You may contact me at tigerseye28@netzero.com
Hi, my name is Sherly Abraham. My son Shawn (12/21/99) was diagnosed
with cataracts in boths eyes at the age of 3 months. He had cataract surgery, IOL
implantation, and pupil enlargement at 6 months. At 1 and 1/2 years old,
he had glaucoma surgery in both eyes (tube shunt). He became blind in his left eye due to
a retinal detachment at the age of 3. He utilized his little vision in his right eye
to the maximum until recently, when we lost his right eye due to a severe infection.
Although he had a corneal transplant, his retina was irreparably damaged. He is now 5
years old and suddenly blind in both eyes. I don't really know where to begin helping him.
You may contact me at sherlyshawn@yahoo.com
Hi, my name is Julie Daniels. I have a daughter named Katrina who was
born 5/24/01. She can see only about five feet away. I have a sight problem myself so that
makes it a little easier to show Katrina how to use her sight to the best she can. You may
contact me at julied617@aol.com
Hi, my name is Leanne Leonard. My husband Bill and I have one
daughter, Dianne, born 5/16/93. Dianna has ROP (Retinopathy of Prematurity), a detached
retina in the right eye and limited vision in the left eye. She was born at 24 weeks and
was 1 pound. She is going into middle school. She has an aide in school. She has learned
Braille but can read large print. She was provided with a CCTV for use in the classroom.
She has difficulty making friends due to her limited vision and missing visual queue's. I
would like to talk to someone who has similar issues. I am a full time working Mom, and we
live in North Reading, MA. You may contact me at ltoplee@aol.com
Hi, my name is Nancy Finnerty. My husband, Erik Sherwood and I, have a
son Alec Sherwood (9/14/92). I'm a working mom, wife, and stepmom from the Boston area,
where I have lived my entire life. I met Alec when he was 6 years old. You may contact me
at nancy.finnerty@bridgespangroup.org
Hi, my name is Ivelisse Nunez. My daughter Chrisalisse Martinez
(6/8/99) was diagnosed with Septo Optic Dysplasia at the age of 3 months, and her visual
acuity is 20/200. I am a 24-year-old working mother. I am Hispanic and I would like to
learn more about my daughter's condition. You may contact me at cochapechocha@comcast.net
Hi, my name is Susan Rawley.
My husband Dennis and I have twin boys born at
28 weeks gestation, on 6/30/95. Alex weighed 2 pounds 5.6 ounces with no medical
issues, and Aaron born IUGR (intra-uterine growth restricted) weighed 1 pound.
Aaron has a moderate hearing loss in his right ear, visual acuity of about
20/350 with field loss due to Retinopathy of Prematurity. He attends public
school. I work full time, am the treasurer of our local Boy Scout troop, MAPVI
board member, and NAPVI Regional Representative for the Northeast.
You may contact me at
sue.rawley@verizon.net
My name is Zaidani. My son Juma (6/7/02) was born with acutaneous
albinism. He is legally blind. He is attending kindergarten and doing very well with his
vision teacher. I was born in Tanzania, East Africa and have been here for 10 years. I
work full time with individuals with mental health problems. I am house manager for one
lady and love my job. You may contact me at zaidani@msn.com
My name is Julie Juaire. Together with my husband of 10 years, Jeff,
we have two children: Jason (1/6/1994) and Jeremy (5/31/1990). Jason has Retinitis
Pigmentosa but lost all of his vision due to a detaching retina and Cotes Syndrome. He has
been through two surgeries to stabilize his the eye to try and obtain some of the previous
vision, but to no avail. He lost his sight about a year ago. I am a mother who works for a
few hours out of the home each week doing different kinds of work. I also have Retinitis
Pigmentosa, but I still have vision. RP runs prominently in my family. We live in
Owatonna, MN and Jason attends the Minnesota State Academy for the Blind. Our family is
going through a ton of dilemmas right now and I don't know where to turn or go from here.
You may contact me at jjuaire@ll.net
My name is Kristi Anderson. My son Justin (9/13/94) has RP. He
inherited it from his father. His vision is not too bad right now, but he is having a hard
time reading books and seeing at night. I have known he's had this since he was 5. I want
to prepare him as much as I can, but am not sure if I should start preparing him now or
wait until his vision is worse. You may contact me at kranderson67@bellsouth.net
My name is Summer Starnes. My husband Wes and I have three children,
Austin (7/28/99), Caden (2/5/02), and Kenzie (11/29/04). Austin was
diagnosed with an optic glioma brain tumor at age 7 months. He is now almost 6 and is
blind in his left eye and has low vision in his right. I am a stay at home mom of three.
My husband owns his own remodeling company and I work part time for him in our home
office. We are researching options for schooling Austin as he is supposed to enter
Kindergarten this year. We do not know if we want to send him to a public school as he
recieves medicine daily through a external port in his chest and are not sure a public
school will be able to handle his situation. You may contact me at summerstarnes@aol.com
My name is Randy Wilhelm. I am the father of a family that includes
Chris Wilhelm - Mother, and our children: sons Kyle (dob 7-25-90) and Brett (dob 5-21-93),
and our daughter Abbey (dob 8-06-97). We live in St. Louis, MO. An introduction - We are
very involved in supporting the Delta Gamma Center, which is our local center for children
with visual impairments. We also love connecting with other parents of children with VI,
both newly diagnosed and veterans. Would love to hear from others. You may contact me at rrwilhe@mkg.com
My name is Lyndsay Byars. My daughter, Madisyn (6/8/04) was diagnosed
with septo-optic-dysplasia at three months of age. I am a single mom, part-time student
and am employed part-time. I feel that in the small community that we are living in, my
resources to information and help for my daughter are limited. You may contact me at lynze_9981@yahoo.com
My name is Rachel Schlichting. My husband, William and I are the
parents of 3 wonderful girls: Kelcey (7/30/96), Tessa (1/25/98), and Allyssa (7/21/00).
Kelcey has Leber's Congenital Amaurosis--an auto recessive gene that is caused by both
parents carrying that gene. It is a hereditary form of macular degeneration. Kelcey is 8
years old, in the 3rd grade with her peers, and doesn't let anything stop her. You may
contact me at angeloflca@yahoo.com
My name is Pamela Clark. My daughter Savannah
(12/07/05) has Aniridia. She can't see up to a foot away.
She can see beyond a foot away although
I am not sure how well yet. She
has wobbly eyes. The eyes in her snap shot pictures
come out a deep red (like she's possessed or something,
usually my mother has to doctor the pics up by editing them before emailing them
to other family members). Savannah
inherited aniridia from her father. She also has
grandparents, an aunt, and cousins with aniridia on her father's
side of the family. I am a 36 year old single mom of
both Savannah and her 14 year old sister,
Samantha (who has no problems whatsoever).
Right now we live with my mom because
I am on disability with depression and fibromyalgia.
We live in a VERY small community in the woods.
You may contact me at
pamzerowanna@yahoo.com
My name is Teri Laska. My husband Craig and I have one son, Eric
(8/13/01). Eric was first diagnosed with Ocular Albinism with Congenital Nystagmus. He had
eye surgery at 18 months to correct crossed eyes. We went for a second opinion at the
University of Montana on Eric's eyes and we were told that he has optic atrophy and
congenital nystagmus and that ocular albinism isn't a possibility. Our doctor at UofM told
us that Eric was already legally blind with a visual acuity of 20/200. We haven't found a
cause for the atrophy on the nerves of Eric's eyes as of yet, so we don't know if his
sight will stay the same or get worse or if someday he will go totally blind. The last of
the testing will be for genetic and/or metabolic disorders. I am a stay at home mom and I
spend my time doing whatever possible to make my sons quality of life as great as can be.
You may contact me at terilaska@hotmail.com
My name is Emily Coleman. My husband James and I have two children,
Molly (10/6/03) and Edward (4/19/05). Our son Edward has been diagnosed with severe optic
nerve hypoplasia. He is currently nine months old and shows no signs of having any vision.
Edward has many specialists that come to see him including a physical therapist,
occupational therapist, and an Outreach specialist from the Montana School for the Deaf
and the Blind. Eddie already has a full social schedule that keeps me busy. I
am a stay-at-home Mom that works part-time out of my home for a psychotherapist. I have
many hobbies including quilting and scrapbooking. I love being at home and playing with
Eddie and my 2 year old Molly. It really is exciting watching him learn all the things
that Molly did, but in a completely different way. I do yearn to meet other adults for
coffee some mornings, and wonder where all my specialists are to visit with me? I would
love to hear from anyone who has already been through the infant/toddler age with a
visually impaired child, so I can hear about successes and frustations and the light at
the end of this tunnel. I would also enjoy visiting with someone in the same boat,
so we can vent together with someone who knows what we're talking about and feeling. You
may contact me at escoleman@centurytel.net
My name is Tina Luke. I have five children: Paul (10/31/88), Rachel
(4/03/90), Elizabeth (2/8/96), Rebecca (1/12/99), and Stephen (6/7/03). Stephen was born
full term, but with visual impairments and moderate hearing loss. He was diagnosed when he
was 6 months old with Cortical Visual Impairment. Recently he had tubes put in his ears
and his hearing has greatly improved. He is delayed in his large motor skills and has some
trouble eating. He is a very happy, content little boy and we love him lots. We are
working with Early Intervention for PT, OT, and a vision class. Stephen has made great
improvements over the past few months. I am a stay at home mom and have recently started a
parent support group here in Las Vegas for children with visual impairments. I am LDS,
love the outdoors, and gardening. You may contact me at vvviiippp333@yahoo.com
Our names are Toni & Kevin Spilsbury. Our son
Connor (4/13/04) has Septo-Optic Dysplasia. I am currently at stay at home mom,
and my husband and I started the Nevada Blind Children's Foundation in 2005. You
may contact me at tonispils@hotmail.com
My name is Clarissa Riggins. I live in Millville, NY and I am the
mother of 16-year old twins born 26 weeks, both a little over one pound. Both girls were
also diagnosed with C/P. Clarissa, who is totally blind due to ROP, is in a wheelchair and
only has use of one hand. She has had many surgeries for orthopedic problems and also has
had a cyro surgery at 2 months old following a scereal buckle known as the silicone band.
Clarissa is a sweet little lady, very outgoing, and loves to play in the school band and
chorus. I'm interested in connecting with any other parent who may have a child like
Clarissa, she's always been placed in schools that didn't give her services she's needed.
For the past 8 years I've been a strong advocate for my girls. Ashley, her twin sister, is
in temp. placement in the local high school with a full time Braille teacher, in a special
ed class part of the day and a different special ed class the other half of the day.
She reads and writes Braille pretty well considering that we were told she'd never
become literate. She's a very bright child with a memory that's so sharp. She also has C/P
but you wouldn't tell by looking at her. She receives OT, PT, Speech/Language and O&M
instruction also. If anyone has any ideas on placement info please contact me, or email me
just to exchange ideas and stories. Let's stick together to make a life for our children
who are underestimated. Remember, don't always listen to the professionals in education,
YOU are the one who knows your child best! You may contact me at mom2twins@aol.com
My name is Lisa Ramirez. I am the proud parent of Gabrielle (7/3/98).
She was born at 25 weeks gestation weighing only 19 ounces. She had to have emergency
sclera buckle surgery days after her release from the hospital. Gabrielle suffers from
retinopathy of prematurity (ROP) and was diagnosed weeks before leaving the NICU. She has
only light perception in her right eye and about 20/200 in her left. She wears glasses and
uses a cane for safe travelling. Gab is a great girl and is doing well in school. She is
currently reading at a 2nd grade level and her writing is steadily improving, which is
where she should be for a 7 year old. You may contact me at gabby_girl1998@yahoo.com
My name is Avery Kenner. I am 47 years old, and have 4 children. Tahj
(17 years old), Luanda (30 years old), my step-son Johnny (27 years old), and my son Javon
(born 4/3/94). I am married to John, and we currently reside is Elizabeth, NJ. Javon was
born with bilateral retinoblastoma. He went through 3 years of treatments to his left eye
(Chemo, plaque radiation, cyro treatments, and external beam radiation) and at age 4 the
cancer came back. He then had to have his left eye enucleated and now wears a prosthesis.
He is now 11 years old, and has been in remission since then. He started taking growth
hormone injections every night in 2004 due to the side effects of the radiation to his
pituitary gland. He will have to take those for the next 6-7 years. He is now schedule for
reconstructive surgery to his left eye socket in April 2006. You may contact me at avery.kenner@cit.com
My name is Beth Borsuk. I'm a stay-at-home
mom of 2 children - a 16yo daughter and a 13yo son with high-functioning autism
and optic atrophy. You may contact me at
bborsuk@comcast.net
My name is Beth Kinder. I am the mother to Marcus Johnson, born
8/9/96. His father is Brian Johnson and we live in New York City. Additional info about
Marcus - Marcus has complicated structural defects involving his retinas which have
necessitated 2 operations so far, including removal of the lens in his better eye. His
best corrected vision is estimated to be between 20/270 and 20/400 at this point, although
it's too early to tell for sure. In spite of his impairment, Marcus is very visually
oriented, looks extremely cute in his glasses, and just learned to pull to standing by
himself! He a very active, outgoing, and delightful little boy. The swing at the
playground is his favorite activity. An introduction - Marcus' dad & I are still
trying to come to terms with Marcus' visual limitations, and trying to find that mental
and emotional state at the intersection of acceptance, hope, denial, sadness, and love. I
continually remind myself that although Marcus will not be a jet fighter pilot, he still
could become President of these United States! It's still not easy for me, and I do
vacillate between delight in my little boy and our family's future, to extreme depression,
anger, disbelief etc. I would appreciate correspondence with anyone in a similar
situation, and "play dates" etc. if anyone's in the same locale. I have so many
questions that I haven't even thought of yet. I know we are only at the beginning of a
life-long road. You may contact me at - beth@athertonny.com
My name is Frank. Our daughter Sam (12/30/01) was born missing her
left eye--microphthalmia. We are a Long Island New York couple in our late 30s. Any
parents in our area who would like to get together to discuss their children's similar
conditions please feel free to write. You may contact me at fieraci@hotmail.com
My name is Marlene Engel. My husband Jerry and I have four children:
Joey, Ian, Alex, and Samantha. Samantha has Septo Optic Dysplasia. We live in upstate New
York. We would love to meet other families in the area who are dealing with a totally
blind child. Samantha is eleven years old, and we have never met anyone else who has a
blind child. You may contact me at mengel2@nycap.rr.com
My name is Tina Lampley. I am a single mother of two girls looking to
find an area that had the services that my daughter Angel (born 4/20/00) needs. She was
born with R.O.P. and had two laser surgeries, she is blind in her left eye and has very
limited vision in her right eye. I want to finish college and become a RN and a teacher of
the visually impaired. You may contact me at tlampley@yahoo.com
My name is Jennifer Bendix. I am a stay at home home. My husband Jason
and I have one son, Mathew, born 4/10/2003. He has Congenital Nystagmus, extreme
near-sightedness. We live in upstate New York. If anyone in this are would like to contact
me, please feel free. I do not know of any other children in our area with visual
impairments. You may contact me at jabendix@yahoo.com
My name is Cathy Montgomery. Of my three children (Jeffrey 9/30/91,
Zachary 8/24/93, and Stephanie 8/11/99), two of them (Jeffrey and Stephanie) were born
with Peter's Anomaly, a very cloudy cornea. Both of them wear glasses to help them see. I
am 33 years old, live in upstate NY, and also have Peter's Anomaly. Unlike my children I
was born blind and my vision is poor. I can see to get around but I will never be able to
drive a car. I do not work because of my low vision. You may contact me at jac7152@frontiernet.net
My name is Rebecca Marks. My husband Darryl and I are the proud
parents of Kyle (4/12/2004) who just turned one recently. I work as a Certified Nursing
Assistant and my husband is in auto parts. Our son Kyle was just recently diagnosed with
Optic Atrophy which is greater in the right eye, and the left is also affected. He has
been declared legally blind. This is our first child and it's a rough and bumpy road. We
have a TVI, physical and occupational therapist that come to our home weekly. Also Kyle
has an Anachroid cyst (fluid filled) on his left front temporal lobe. It's not cancer!! He
also has some developmental delays as well. We live in central New York and would like to
talk to other parents. You may contact me at peakiemae2@hotmail.com
My name is Rajendra Lama. My wife Thuli and I have one son, Rabindra
(2/15/95). He has had low vision for the past three years. His vision is going to
decrease--the doctors from Nepal say he has Stargardts Disease. We do not know what this
is or how it is caused, we are still investigating it. We have recently migrated to the
USA from Nepal to be permanent residents of the US. We are processing to get Rabindra
enrolled in school. Because he is low vision he cannot read text books or small objects.
We would like to get advice and information for his further treatment and schooling. You
may contact us at rlama84@yahoo.com
My name is Maribel Montes. My husband John and I have two children,
Isabel (who is 8) and John (9/2/04) who is 17 months. We were upset and full of tears when
we found out about John's disorder (Sporadic Hereditary Aniridia, Vertical Nystagmus) at
two months of age. I noticed something wrong as he began to try and open his eyes. After
being referred to a doctor in New York and then to another doctor in Boston, I can say
today that John is the light in my eyes. He has had three Goniotomy's to date to prevent
the onset of Glaucoma. We have recently submitted paperwork indicating John as legally
blind/visually impaired. I thank God every day for having put two wonderful doctors in our
path and St. Lucy (patron saint of eyes) for looking after his beautiful black eyes. I
would love to hear from other parents, guardians, or loved ones who would like to share
information. Maybe together we can shed a better light on this disorder for all of us. You
may contact me at choandiz@optonline.net
My name is Lauren Grubbs, and I am a teacher in Greensboro, NC.
Together with my husband Scott we have one son, Jacob, born 7/15/02. Jacob had seizures
after birth, during which he stopped breathing. He has cerebral atrophy as a result, and
has cortical visual impairment and other (especially fine motor) delays. He is otherwise a
very loving little boy. I want to find other parents with visually impaired children in
our area to form some kind of support/activity group. You may contact me at laurenandjacob@hotmail.com
My name is Pamela Smith. My son, Jes, is blind from Retinopathy of
Prematurity. He went totally blind by the time he was five months old. I have been a
parent advocate for 18 years. When my son was 2 I started a parent support group in
Guilford County, NC and helped with our state parent group in Raleigh. I went back to
school to learn Braille, so that I could write Jes "love notes" in his lunch
box. From that point, I added on to my degree to teach children with Visual
Impairments. I am a certified Braillist and currently working on my Master's of Visual
Impairment & Orientation & Mobility, as well as Assistive Technology. I have
taught children from birth to age 21; learning disabilities, hearing impaired, behavorial
emotionally challenged, cognitively delayed, as well as children with a variety of visual
impairments ranging from low vision to total blindness. I have taught for over 22 years
and I volunteer as a parent/child advocate and provide respite care for mothers &
fathers. I know the law and often challenge school systems as a parent advocate.
My son just graduated from High School as a member of the National Honor Society. He
was awarded a Presidential Scholarship and he is going to college to major in Music
Engineering and Composition. Jes is his own advocate and he travels with his best friend,
Harley. Jes flew to New York when he was 16 to train with his dog. He worked at Wake
Forect University in their Technology Information Systems the following summer and he
traveled with Harley back & forth to work independently via taxi. I am a very proud
single mother and I am ready to push my baby out of the nest to see him fly! I know he is
ready. We live in Winston Salem, and you may contact me at phuntviteach@aol.com
My name is Viviette White. My husband Alden and I have three children:
Alden II (7/15/94), Matthew (11/22/95) and Aliya (12/31/02). Our son Alden is
Visually Impaired due to a cataract condition he acquired at birth. He has had the
cataracts removed but the surgeries have made his retinas very weak and not able to heal
correctly. He has had a total of six surgeries so far on both eyes. He has detached
retinas in both eyes. He can only see color out of the left eye and blurry vision out of
the right eye. He cannot see hardly anything when it is nighttime out of either eye. I am
the mother of Alden Jr. and I have severe nearsigtedness. I am adopted so I do not know
what my medical history is. My husband wears glasses as well, but his eyesight is not as
severe as mine. You may contact me at viviettewhite1@aol.com
My name is Luis Villagomez. Our child, Miguel
(11/20/97) was diagnosed with Optic Nerve Damage when he was 6 months old. I'm a
concerned parent that wants to share information with other parents on how to
deal with the issues of having a visually impaired child. You may contact me at
luis3845@yahoo.com
My name is Ami Beery. My husband Mike and I have two children and live
in Rockford, OH. Mackaid (10/20/97) and Mackenzie (11/21/95). Mackaid has Macular
Degeneration and he is also extremely far-sighted. I work part-time and attend college
full-time. I also have Macular Degeneration. You may contact me at mike_beery@msn.com
My name is Michelle Ballard. My husband Scott and I have one son,
Jalen, born 8/28/02. Jalen was born with bliateral microphthalmia and cataracts. The
cataracts were removed at 3 months of age and he is considered legally blind. We are
looking for other parents or people with similar disabilities. Jalen does have some useful
vision with correction, but it has to be fairly large print and he holds it very close to
his eyes. We are very lucky. I am currently going back to school part-time to obtain my
nursing degree. I quit my job to take care of Jalen for an unrelated surgery and decided
to go back to school. My husband is a self-employed musician/teacher. We live in Toledo,
OH and you may contact me at mballard@buckeye-express.com
My name is Roberta Lowney. My daughter Amanda (5/1/77) has Bilateral
Anophthalmia. I am a single mother working full time as an accountant and taking care of
my daughter. You may contact me at robertalowney@hotmail.com
My name is Pennie. Together with my wonderful and supportive husband
we have 4 children--Gretchen, 7/19/93; Ian, 7/30/95; Celine, 4/29/98; and Michael,
12/16/02. Our youngest, Michael, was born with Aniridia and congenital cataracts. Although
he does not have the normal eye sight of a 5 month old baby he is very happy and loves to
play. We are still in the state of shock I would say since we just found out about
Michael's visual impairment about 2 weeks ago. Even though he was born with Aniridia &
cataracts our pediatrician (former) told us his eyes were fine. We noticed as early as 2
weeks old he eyes didn't seem normal but as most parents do we trusted and believed in our
pediatrician. I am a stay home mom so I spend every spare moment doing research and
speaking with different doctors or trying to find support groups. I think it is great to
be able to e-mail other parents and keep in touch. I look forward to getting the chance to
write back and forth with other parents. We live in Lake Ariel, PA and you may
contact me at chindamo@echoes.net
My name is Alison Smithmyer. My husband Paul and I have two children,
Jacob (1/11/03) and Megan (8/24/00). I am a speech-language pathologist who works with
children aged 3-5 with special needs. I noticed something was wrong with Jacob's eyes the
minute I saw him after birth, but put it out of my head that something was wrong and that
it was probably normal, I just didn't remember from my first. At his 2 month check up I
mentioned it to his Dr. and within a matter of weeks he was diagnosed with bilateral
ectopic lentis (dislocated lenses). At six months, he had an examination under anesthesia
and was prescribed lenses. He does well with them, but lately I have noticed his eyes
turning out more frequently. He is having another EUA in a couple of weeks and I am really
worried that his sight may be getting worse. As far as I understand this condition is
rare. If anyone has any experience with it I would greatly appreciate any information.
Thank you. You may contact me at alison@penn.com
My name is Sandy Simons. Together with my husband Steve we have five
children: Matthew (5/18/95), Michele (3/32/92), Heather (1/29/90), Sean (8/15/88), and
Ethan (6/19/04). Ethan is a foster baby who is a victim of Shaken Baby Syndrome. We do not
know how long we will care for him prior to his return home. He has the classic symptoms
of Cortical Visual Impairment. We'd like to get information about how to help Ethan
(we are working with an early intervention team, but decided to do some research on our
own). I am hearing impaired, so this is something completely foreign to me as I am very
visually oriented! We live in Ivyland, PA and you may contact me at sasimons@comcast.net
My name is Kristin Smedley. My husband Michael and I recently moved
from the Chicago area to the Philadelphia area. We have three children total, two of which
are visually impaired. For a while it was difficult for us to go from doctor to doctor not
having a definitive diagnoses, but we have learned to leave a lot of the researching to
the doctors whiles we try to handle the daily living challenges that come with raising two
visually impaired children. Ours sons Michael (1/29/00) and Mitchell (7/22/03) have
been diagnosed with either Leber's Congenital Amaurosis or some hybrid of Retinitis
Pigmentosa and Macular Degeneration. They were both diagnosed at 4 months after noting
nystagmus. Michael has a bulls-eye pattern of dead vision cells in his retina. Mitchell's
had not yet formed the bulls eye pattern as of 4/05. Both seem to have a fairly good
visual field up to 6 ft, but the acuity is only 20/300. Both boys wear glasses to help
with their farsightedness. We are hoping to find email and in person support groups to
discuss these daily challenges as well as exchange tips on new technology, educational
concerns and a variety of other issues. You may contact me at kmsmedley@yahoo.com
My name is Mary Beth Doyle. I am the Director for Supportive Services
for Students with Disabilities at the Community College of Allegheny County, Allegheny. My
granddaugther, Mandy is 3 and 1/2 months olds (5/11/05) and had aniridia and glaucoma. She
takes drugs, had has three operations, and is only now having "infant
simulation" to address her lack of development. You may contact me at mdoyle@ccac.edu
My name is John Hindmarch. My daughter Hannah
(7/29/05) was born with bilateral optic nerve aplasia. She was born with no left
ear. She shows no other signs of mid-line defects, etc. I am a 38 year old male,
employed as a maintenance worker in a public school. You may contact me at
janitorcap@hotmail.com
My name is Waffa Freij. I am a mother of three children ages 8, 7, and
4. My second child, Reem (9/23/98) was diagnosed with Best's Disease, her vision is still
50/20. I want advice on how to be a help for her, and when she should be learning braille.
You may contact me at freijri@aol.com
My name is Amy Hallasy. Michael Hallasy and I are parents to Meredith
Hallasy, born 7-27-96. Her grandparents are Jacklyn Rhinehart and Jack Gary. We live in
Greenville, SC. Additional information about Meredith - Meredith was born at 27 weeks
gestation. While in the hospital she contracted meningitis. The end result was damage to
the occipital lobe and cortical visual impairment. Meredith sees remarkably well for the
type of damage she incurred. We are interested in talking with other parents of children
with cortical visual impairments. It appears that vision is Meredith's only long term
disability. An Introduction - I am currently a stay home mom. Although I have a master's
degree in Recreation Therapy from the University of North Carolina. As an undergraduate I
attended Wake Forest University. I worked for many years with adults and children with
disabilities. My Husband, Michael is a registered Architect. We currently live in
Greenville, South Carolina but will be moving to Raleigh, North Carolina within a couple
of months. You may contact me at Hallasy@aol.com
Our names are Richard & Helen Simensen. We are grandparents living
in Columbia, SC.We have 1 grandchild, Margaret, with Retinopathy of Prematurity (ROP),
born 7/12/91. Additional info about Margaret - A lovely grandchild - some delays but
making fantastic progress. The local public school has been most helpful and cooperative.
Margaret will be in a regular kindergarten again next year (at our request). In the
regular program she has a personal aide. She spends the afternoon with her vision teacher.
Next year there will be greater integration of services. An introduction - We are
custodial grandparents. Special children were not new to us - Helen completed a program in
recreation and worked with special children. Richard's educational background is special
education and neuropsychology. However, raising a child is uniquely different than
teaching or providing service to others. We would welcome contact with others. You may
contact us at - simensen@ggc.org
My name is Christy Herring. I have four children,
Caity, Chris, Casie and Carrie. Carrie was born on 4/24/1995 and has septo-optic
dysplasia. She is blind in her left eye, no lights, no shadows. You may contact
me at jllbit001@aol.com
My name is Marie Ivers. My husband Bo and I have three children:
Miranda (8/18/94), Corah (5/15/98) and Mason (5/15/98). Mason has X-linked occular
albinism. He was diagnosed at the University of Minnesota at 8 weeks of age. His twin
sister and older sister have no eye problems. I am adopted, and had no idea that I was a
carrier for x-lined occular albinism until Mason was born. I have limited
information on my birth parents; only that my birth father was Native American (with blue
eyes) and had very poor eyesight. My birth mother had no eye problems. My children are
light skinned and have blonde and auburn hair color. You may contact me at mivers@usd.edu
My name is Dawn Manning. My son Jonathan (4/18/97)
was diagnosed with visual agnosia by the
University of Minnesota. He has perceptual problems in regards to his vision.
My husband and I have 2 boys ages 11 and 9. Our youngest acquired brain
damage and vision problems at the age of 1 year after an unfortunate accident.
We continue to search for help in regards to visual agnosia and the cortical
impairment that he has been left with. Any information in regards to this would
be very appreciated. My email address is
Dawn.Manning@gmail.com
My name is Patsy Johnson. My husband Bobby and I have three children:
Dustin (1/16/90), Jonathan (11/8/85), and Bobby Jr. (8/24/82). Dustin was diagnosed with
Retinitis Pigmentosa in 1997. I work at a school in the special education classroom. I was
previously a certified nurse aide for 14 years. I still do that part-time every other
weekend. You may contact me at pj198203@yahoo.com
My name is Cynthia Malone. My daughter Brandy (4/30/78) has
been totally blind since birth due to septic optic dysphasia, a rare condition involving
the deterioration and loss of the optic nerve, dysfunction of the pituitary gland, growth
deficient, thyroidism, hypoglycemia, and seizure prone. Brandy was diagnosised at
Vanderbilt Children's Hospital in Nashville, Tennessee at 2 months of age, after moving to
San Diego, California and care at UCSD Medical center was placed on growth hormone in
1984. She was mainstreamed in the San Diego school system until our move to Tennessee, she
then attended and graduated from the Tennessee School for the Blind in 2000. I am a
clinician and hold a masters degree in clinical psychology. I have specialized in the
field of substance addiction for 16 years. My husband Paul, Brandy, and I reside at our
ranch in Hartsville, Tennessee. I was President of the San Diego chapter of CAPVI in the
'80's and started a parent support group upon moving to Tennessee for parents of visually
impaired children and a local chapter of TAPVI. At the time of Brandy's birth in 1978
resources and help for parents/VH children were non-existent. Much progress has been made
over the years but there is certainly more work to be done.
My name is Alison Rickerl. I am the Secretary for
NAPVI and also for the Houston affiliate, HAPVI. I'm a single working mom
and live at home with two daughters, Meglyn (9/3/92) and Madison (7/16/94).
Madison has Joubert Syndrome, which causes her visual impairment and other
disabilities. My son, Benjamin (12/30/96-4/4/00), who also had Joubert Syndrome
and deaf-blindness, passed away when he was three years old. We miss him
terribly. Madison had kidney failure and transplant (3/03), and post-transplant
lymphoproliferative disease, a lymphoma-like cancer resulting from getting a
virus while over-imuno-suppressed. After many
surgeries and chemo, she has been in remission since 3/04 and is doing really
well. She'll be going to 6th grade in the Fall 2006. Meglyn is a pretty
typical teenager, refreshing and sweet and excited about starting high school. I
enjoy my volunteerism with NAPVI and other groups and look forward to meeting
many of you at upcoming conferences. You may contact me at arickerl@hotmail.com
anytime. [6/2006]
My name is Ramona Yerena and my daughter is Ashley Amaro and she is 9
years old. Ashley was born with cataracts. I live in Irving, TX and you may contact me at ramona.yerena@tvmax.com
Hi, my name is Tonia Johnson. I am a single mom of two. We live in
Waco, Texas. I work full time--my son is in the first grade and Carolyn (born 8/05/01), my
special needs daughter, will be starting school this year. Carolyn is considered legally
blind with farsightedness, being cortically visually impaired. She can see movement and
has light perception. You may contact me at toniaj77@yahoo.com
My name is Rebecca Pompa. Together with my husband Pete we have a
16-year-old daughter, Alexandra, (5/31/88) who is visually impaired and diagnosed as
legally blind. Alexandra has a cataract in her left eye. We live in Spring Branch, Texas,
and you may contact me at fawcett@gvtc.com
My name is Melissa Middleton. My husband Brett and I are the proud
parents of quadruplets born at 25 weeks gestation. Alexander, Benjamin, Callie, and
Donovan were born on 6/10/03 weighing between 1 pound 2 ounces and 1 pound 8 ounces. Our
son Alex died at 3 weeks old from a blood clot in his heart. The other babies made it home
from the NICU, and are doing very well. All of our children had ROP (retinopathy of
prematurity) but Callie's and Donovan's is now resolved, with the chance of
nearsightedness in the future. Benjamin's ROP has resulted in several surgeries, which
were not successful. He is blind in his left eye, with some light perception. He has
pathological myopia (very near sighted) and a nystagmus in his right eye. Also, due to a
Grade III (creeping into Grade IV) blilateral IVH (brain bleed) - with slight
hydrocephalus...his brain does not see everything that his eye has the ability to see,
however this is improving over time. I am finishing up my Master's degree in licensed
professional counseling, and am currently doing an internship at a juvenile correctional
bootcamp. As much as I can right now, I am a stay at home mom, and loving it. We live in
Wake Village, TX and you may contact me at balderdash12002@yahoo.com
My name is Susan Ames. My husband David and I have 3 children: Nicole
(10/20/83), Daniel (10/15/84), and Michael (11/15/90). Michael has zero vision in his left
eye and a small amount left in his right 20/400 with 80% field loss - nasal remaining, due
to a Chiasmal Glioma infiltrated in optic pathways. He has severe optic atrophy in both
nerves. The tumor is stable since radiation in 1999, chemotheraphy in 1995 and 1997. He is
an active, happy, understanding and loving boy. I am concerned about the quality of
education Mike is getting. Mike is going into 9th grade next year. Based on the last 7 and
a half years attending CCISD, being the only VI child at every school he's attended, I
feel that there is effort but how can he get a truly appropriate education by non-VI
certified teachers and aides? If I could somehow organize my thoughts and words well
enough to persuade the ARD team and funding wasn't an issue maybe they'd agree. As it is,
just getting the documentation correct on his IEP's is something I've learned to dread.
Constant follow-up, and negotiations. That's okay, it's my job. There are great ideas at
his ARD's but every year few are realized. Does everyone here have these thoughts, this
reality, am I alone? Does your child go full time to TSBVI? How did they get there? We
live in League City, TX and you may contact me at susanmary@houston.rr.com
My name is Jessica Bolyer. My husband Brian and I have one son, Jakob
(5/12/04). Jakob has Joubert Syndrome, he has bilateral coloboma and bilateral micropalmia
(small eyes) in both of his eyes. From what we know he does have some vision but not much.
He loves lights. He can't open his eyes very much because they are so small. I have been a
stay at home mom with Jakob for the past year, but just went back to work full time to pay
for Jakob's insurance. Our family lives in Rowlett, TX and you may contact me at jesslibra22@aol.com
My name is Criselda Martinez. I am a 30-year-old single parent of 3
children, ages 13, 10, and 5. My 10 year old daughter Victoria (7/24/95) is legally blind.
I would like support and education on how to make myself a better parent to her. You may
contact me at emdprincess@yahoo.com
My name is Sylvia Moss. My husband Chris and I have one son, Garion
(7/10/97), who has Retinitis Pigmentosa. He is a very creative, second grade boy that is
completely denying that he needs to wear glasses. Meanwhile I am doing my best to head up
all that is involved in getting his school assistance i.e. ARD meetings, etc. Exhausted,
but hanging in there. You may contact me at chrisylvia1991@yahoo.com
My name is Cheryl Taylor. I'm a single mother of two wonderful
children, Robert (9/19/86) and Brendi (5/2/89). Robert was born with Sporadic Aniridia, he
developed Glaucoma in the second grate, and he has a small cataract in his left eye. We
live in Texas, and I am a manager at a local restaurant. You may contact me at taylormade196613@yahoo.com
My name is Kimberly Rogers. I live with my husband and son, Hayden
(9/23/03) in Texas, near DFW airport. Hayden has had two surgeries for strabismus and has
cortical visual impairment due to an in-utero stroke. I have been a full time mom for
about a year now, allowing more time to ensure Hayden receives the therapy he needs. You
may contact me at rogerskm@hotmail.com
My name is Shelley Oldham. My husband Wes and I have three children,
Allie (5/27/93), Riley (6/3/98) and Reid (2/17/03). Reid was diagnosed with
CVI at 12 weeks old. He has never used or acknowledged his vision. Occasionally he will
"look" at red lights or red hearts if placed on a black background. Reid is our
youngest and started having seizures when he was 3 weeks old. He has since been diagnosed
with Epilespy, having daily seizures, Global Delays, CVI (doesn't acknowledge his vision
at all), Hypotonia and is g-tube fed. Most of Reid's doctors are at Medical City and we
live in Denton. We would love to meet more parents who face similar issues in day-to-day
life. Please contact us at burninfences@verizon.net.
My name is Tammy Raulerson. My husband Michael and
I have a six year old daughter, Tacey (9/27/99) who was diagnosed with Bilateral
Retinoblastoma when she was 7 months old. Her left eye was removed when she was
9 months old. She only has about 10% vision in her right eye. She has recently
developed radiation retinopathy, ocular hypertension, a cataract and numerous
scarring between her lens and iris. Tacey is full of life and a light to all who
meet her! I teach in the College of Education at Texas A&M University, College
Station, Texas. I have a lot of experience teaching children with special needs,
but have a different perspective being a parent. You may contact me at
raulers@tca.net
My name is Janie Bishop. My husband Greg and
I have 6 children we are truly blessed to have all healthy happy children. My
twin has OA so I have a different perspective of what
my son will encounter as a low vision child, hindsight truly being 20/20.
Knowing about OA and living with OA my entire life has prepared me for his
future but, I still have many questions as a mother and as a advocate for my
child. I would love to hear from other mothers about the early years and some of
the things that worked for them to prepare for preschool. Our
son Harrison (6/19/05) has x-linked ocular albinism with nystagmus. His
visual acuity is 20/200 at best guess. he had feeding issues at birth but
otherwise has been extremely healthy and no developmental delays are expected.
You may contact me at
bjanieb@sbcglobal.net
My name is Lisa Madsen. My husband Paul and I have four
children: Hans (7/12/89), Jay (9/27/87), Victoria Jo (5/13/91), and Ethan (12/26/03).
Ethan has been diagnosed with Cortical Visual Impairment (CVI), due to a hypoxic
brain injury during the first months of life. He also has Cerebral Palsy. You may contact
me at lisa@madsenfamily.net
My name is Jennifer Serrano. My husband William and I have two
children, Elliana (5/24/01) and Tristen (2/26/04). Elliana has bilateral microphthalmia
(small eyes) and colobomas (missing parts of) her iris, retinas, and optic nerves. We
believe she is completely blind (but she's so active half the time you'd never know it!).
She is very smart and has all her books memorized and can sing around 100 songs! I am a
labor and delivery nurse and my husband is a chef. My daughter wears conformers/scheral
shells to help her eye sockets grow. If she wants in the future she can wear colored
shells over her eyes so her eyes look more "normal"--I think she's beautiful
now! She attends pre-school and is learning to read braille and use a cane. Would love to
chat and make friends with other parents! You may contact me at jjserrano@att.net
My name is Anne Harvey. My son Adam (5/1/03) was
diagnosed with CHARGE syndrome and has bilateral microphthalmia & right optic
nerve coloboma. He also has a very mild hearing loss, but has a 4-5 year old
vocabulary and an incredible knack for memorizing EVERYTHING! He is truly a
wonder! My husband Ron and I have a younger son, Alex (524/05). I am an RN at
PCMC in Salt Lake City. I work in pediatric educational services as a Clinical
Programs Coordinator. You may contact me at
rh6842@msn.com
My name is Jean Cummings. My husband Dave and I have two sons, Tyler
(5/4/94) and Scott (6/01). We live in the Virgina Beach area of Virginia. We found out two
days ago that Tyler has ROP and Rod Con Dystrophy. We are just trying to process and learn
as much as we can. We have learned a great deal of medical information. We are now in the
coping and seeking on the emotional, day-to-day aspect of this disease. You may contact me
at jean2bch@cox.net
My name is Joe Bartling. Together with my wife Karen we have four
children: Hannah (1/23/95), David (7/15/00), Jesse (11/30/00), and Abigail (2/15/01). All
four of them ware completely blind wth varying causes including bilateral anophthalmia,
ROP, and cryptothalmia. Over the last 8 years we have adopted them all from different
countries, Korea, India and China. The oldest two are, ages 5 and 10, are in Kindergarten
and 3rd grade respectively. We encourage loving families to consider adopting special
needs children, especially blind children. You may contact me at joe.bartling@spiderware.com
My name is Erin Case. I am 22 years old, with two wonderful boys,
doing the single parent thing. Alex was born 5/5/04, and Seth was born 1/8/05, 6 weeks
premature. We didn't notice his nystagmus until he was 3 or 4 months old. About a year ago
he was diagnosed with occular albinism. We go back to the opthamalogist in June to
possibly get glasses for him, and see what other special services he could receive for
school, etc. You may contact me at beeutifulgurl@yahoo.com
My name is Irene Conlin. I am the mother of four
great kids: Joseph (6/13/98), Elizabeth (1/11/94), Jessica (9/15/96), and Andrew
(12/21/97). Elizabeth is totally blind due to SOD. She also has been diagnosed
with Addisons Disease. She is a total Braille reader and uses the long white
cane for mobility. I am active duty Navy and my husband Steven works for a local
computer company. We live in Virginia Beach and you may contact me at
iconlin@hotmail.com
My name is Nancy Kaplan. I am a single parent living in Redmond, WA
with my 4 special needs children. I work as a Social Worker and parent educator. I worked
for 20 years with children and just recently began a new job working in Hospice with
mostly older adults. My children (Jaron, Yu Xin, Lan Fen, and Irina) range in age from 6
to 15. My youngest daughter Irinia is missing both her arms. My other daughter Lan Fen is
missing her left hand. All three of my oldest kids have complex learning disabilities. I
am in the process of adopting a 6 year old boy (named Min) from China who is diagnosed
with congenital microphalmus. He is described as a happy and extroverted child who loves
music. You may contact me at nan4adopt@aol.com
My name is Lori Bennett. I am a mother of three girls Courtnee
(10/17/93), Brittnee (3/26/96), and Destinee (4/24/97) who keep me very busy. Britnee has
Bardet-Biedl syndrome, but all of our girls are very special to us. We live in Port
Orchard, WA. You may contact me at jim_lori03@yahoo.com
My name is Mark Woodward. Together with my wife Christa we have two
children, Will (8/30/02) and Lora (3/9/04). Lora was diagnosed with Bilateral Coloboma's
with Microphthalmos. She is blind in both eyes. Christa and I live in Seattle, WA. I am a
pastor of a wonderful church and my wife is a stay at home mom. You may contact me
at seafirstnaz@reachone.com
My name is Darlene Almer. Together with my husband Jim we have one
son, Tom, born 6/10/92. Tom was born at 25 weeks and developed ROP. Surgery was done at 4
months of age, with scare tissue developing and retracting, pulling his retinas loose. He
has light perception in right eye and partial field (temporal fold in retina) 20/400 in
left eye. He has a scleral buckle on left eye. He reads and writes Braille--uses
Braillenote at Middle School. I'm a Mom first. I work part-time in the computer lab
at an elementary school. I'm extremely involved in my son's school, being the
"watchdog" for his programs. I also coordinate a support group locally for
parents of children with special needs. You may contact me at DarleneA@aol.com
My name is Kim Alfonso. My husband Pedro and I have one daughter,
Alexandra, born 7/19/99. She is blind in her right eye and severely vision impaired in her
left eye--she can see colors, shapes, and has functional vision. She will be a Braille
reader. She was born with Peter's Anomaly (corneal opacities) and has glaucoma. You may
contact me at kimalfonso@starpower.net
My name is Stacy Dickson. Together with my husband John we have a
wonderful 3 year old, John "Quincy" (1/10/02) who has X-linked Retinoschisis. We
live in Hurricane, WV and you may contact me at suggas@excite.com
My name is Sahra Jola and I am a stay at home mom. Together with my
husband John we have 5 children: Zach, 12/20/85; Amanda, 1/13/87; Mike, 4/5/90; Lance,
4/16/92; and Jack, 9/19/95. Lance has a mitochondrial myopathy, neuropathy, dumping
syndrome, dysphasia, hypoglycemia, reflux with a nissen x 3, g-tube, Broviac CVL. He was
recently diagnosed with RP but has had symptoms of it for about a year and a half. All
that keeps going through my head is HELP!!! I don't know how to help Lance. I'm not sure
where to start with the RP. I have the other stuff pretty much under control. He's also
telling us he is having problems hearing. If you need help with tube feedings, swallow
problems, wheelchairs, etc., I'd be happy to help if I can. We live in La Crosse, WI. If
you can help me or would like my help, you may contact me at jrjola@aol.com
My name is Jena Holman. My husband Scott and I have 4 daughters, one
son and one granddaughter and we are adopting another son, David (2/12/00). David has
optic nerve pallor of both eyes, congenital nystagmus, cortical vision impairment and
hyperopia. You may contact me at holmanj@charter.net
My name is Jenissee Volpintesta. My partner Lenny
and I have 3 children, Thane (8/21/97), Soren (5/2/99) and Elias (4/12/06).
Elias was born at home in April, one of the happiest days of my life. He
exhibited classic ONH signs almost immediately, and we have struggled for the
past 12 weeks trying to figure out what was wrong with our son. On 7/18/06 he
was diagnosed with Bilateral Optic Nerve Hypoplasia with Midline Defects. He
also has nystagmus present in both eyes. We do not know the extent of his
impairment, at best guess he is able to see changes in light. Now that we have
the diagnosis we are dealing with coming to terms with what this means for our
baby and our family. I need help and support now more than ever, this is really
hard for us. You may contact me at
jvolpintesta@dkattorneys.com
INTERNATIONAL
Canada
My name is Tanya Lindsay. I am the mother of three children, Bailey
(10/12/96), Daltin (4/28/01), and Kennedy (5/28/03). My son Daltin has subluxed lens in
both eyes, his right eye being the worse of the two. He has undergone surgery on both eyes
and most of what the doctors told me I don't understand. I see a doctor for him regularly
and it seems his right eye is getting worse. We are patching his right eye at the present
time. He wears glasses with a Rx of 14 (bifocal 2.75) for the right eye and the left eye
is 13 (bifocal same). My six month old baby also has subluxed lenses and is farsighted.
She has a lazy eye and we are patching the right to work the left. We are not sure if her
lenses are going to slip further so we wait. I am 27 years old and have 20/20 vision.
Never had any problems with my eyes. Daltin and Kennedy's dad also has subluxed lens but
not very severe. It wasn't noticed until we took my son to the eye doctor. I don't
understand most of it because I never had to deal with this before. I find it hard because
no on relates to me. We live in Saskatoon, Saskatchewan, Canada and you may contact me at tlindsay23@shaw.ca
My name is Katie Vanderyt. My husband Bill and I
have a daughter with Retinitis Pigmentosa. I am a 40 year old mother whose
family has NO history of this disease. Trying to learn about it and meet new
people for support. You may contact me
bvanderyt@cogeco.ca
Columbia
My name is Henry Betancourt. Together with my wife Rocio, we have one
daughter, Maria Paula, born 4/20/95. Maria Paula is blind. Her diagnosys is retinopathy
due to prematurity. I am an electrical engineer, and I want to learn about blindness and
to know about education, leisure for blind people and medical treatment. We live in Cali,
Columbia and you may contact me at hbingenieria@andinet.com
New Zealand
My name is Michelle Jenkins. I am the mother of a family that includes
my husband Mark and our daughters Emma (06/01/93) and Holly (06/01/97) living in
Christchurch, New Zealand. Additional info about the girls - Emma and Holly were born 3
mths prem , Emma had a left eye retinal detachment due to the oxygen and the right eye was
saved by surgery. She does however still have severe myopia 6/60 and has a small amount of
cerebral palsy in one hand. Her sister Holly had a lot of feeding problems and is alot
smaller has patching on one eye,and has some dyspraxic tendencies. An introduction - I
have been a Bank Officer in the past for thirteen years and have no other children, as I
am very involved in their needs through Early Intervention programmes, Kindergarten and in
preparation for their schooling. I do however work 9 hrs a week in a bank and am a
Christian. You may contact me at - cjenkima@es.co.nz
My name is Victoria Richardson. My 4 month old son William has been
diagnosed with congenital aniridia. He is our first baby so this diagnosis was a huge
shock. There is no family history of aniridia, or any eye problems for that matter. Will
(born 5/10/04) is a gorgeous happy baby with beautiful dark eyes (due to the dilated
pupil). We are yet to know how much Will can or can't see as he is too young to tell us,
but we do know he sees our faces and can track objects from side to side. He doesn't
seem overly sensitive to glare but we will get him some sunglasses. We think it will be
his distance vision and ability to see detail that will be most affected. We are thankful
he doesn't have any of the other nasty side affects that can come with aniridia such as
Wilms Tumor and mental problems. His hearing is also fine. I am happy to email with other
parents of aniridics and I can be contacted at richos@xtra.co.nz
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