Letters from visitors
last updated:3/02/1998
FROM Carol Freedman and Kathy Ryan(Mar.1998):
I have a friend who I have been assisting in her effort to uncover
information regarding ACC (her daughter was diagnosed at the age of 3 and
is now 18 years old). We "stumbled" upon your site and wow! You have more
information than we were even imagining locating. Thank you so much for
sharing your experiences with the world. I am cutting and pasting a letter
that my friend, Kathy, and I sent to the organization in Maine that you
have listed in your web page. Anyone wishing to communicate with Kathy
Ryan may do so through me at the following addresss:
carolcats@mindspring.com. Once again, thank you so much!
Our letter follows:
Dear Kathy:
I have a friend, Kathy Ryan, who has a daughter, Laura, who is 18 years
old and was diagnosed at the age of 3 with Agenesis of the Corpus Collasum.
During Laura's whole life, Kathy has had an extremely difficult time
locating any helpful information regarding the disorder. Now, with the
help of computers and my access to the internet, we have discovered
information about your organization! As my friend Kathy said, "we've hit
pay dirt!" Since Kathy does not have access to the internet, please, if
you would like to communicate with her via e-mail, send any e-mails to my
address: carolcats@mindspring.com. Below is a letter that Kathy wrote
about her daughter:
Laura is 18 years old. She is in a special education program at school.
Laura sings in the church choir and volunteers several hours a week at
the hospital.
When Laura was an infant, I thought she was blind. At the age of 9
months, she was diagnosed with Cogan's Ocular Motor Apraxia. At 3 years of
age,
they diagnosed her with ACC. At the age of 2 she had been enrolled in an
early intervention program (because of her Cogan's Ocular Motor Apraxia).
She received OT, PT, and speech therapy. Laura was also echolalic. She
has tibial, femoral antiversion, and she lacks hip rotation. On July 20,
1990, Laura broke her ankle in the growth plate. X-rays showed her bones
are riddled with cysts. 2 weeks ago, during a school physical, the
Dr.detected a heart murmur. Laura was seen by her own physician who
referred her to have an echo-cardiogram. We are waiting for the results of
the
test.
I consider Laura to be a true miracle, a great inspiration, and the light
of my life.
Signed,
Kathy Ryan, mother of Laura Weaver, age 18 (patient with ACC)
-------------------------------------------------------------------
If anyone is interested in reaching Kathy by mail, her address is listed
below:
137 South 5th Avenue
Manville, New Jersey 08835
Any information (support group, education, etc.) would me ever so
appreciated. I can't tell you how wonderful it has been to "discover"
you! I must tell you that credit for that should go to a web site from Japan
(the parent's of a young girl named "Maki"). I hope (and my friend Kathy
hopes) to hear from you soon! Thank you soooo much!
Carol Freedman
carolcats@mindspring.com
FROM Barry and Ashley Dowler(Feb.1998):
Hi, its nice to find an ACC site with real experiences posted!!!! My
Name is Barry and my wife is Ashley, we live in London, England. We have
a daughter Sophie who is almost 5 years old. She was diagnosed with ACC
at one day old. She was born completely bald except for a dark tuft of
hair on the back of her head which alerted the doctors that something
could be wrong with her brain. They gave her an ultrasound and then a
CAT scan which showed the absence of her corpus callosom. The treatment
we received from the consultant at the hospital was atrocious, he told
us that she would be lucky to survive for a few days and that if she did
she would be in a vegative state for the rest of her life!!!! How wrong
could he be???
Well we demanded to be referred to Great Ormond Street Childrens
Hospital and the attitude there could not be more different. We saw a
wonderful man called John Wilson who gave us real hope for Sophies
future. So if anybody out there has had bad experiences dont give up,
seek another opinion and look to the future.
Sophie did not crawl until 16 months but then walked at 20 months. Her
speech was very delayed but now at 5 years old she does not stop and it
drives us crazy!!!!! She has a little trouble with her gross motor
skills and has to be helped on and off certain things like swings etc at
the local park but she runs and jumps just like any other child. She
also has slight spina bifida which can make her a little wobbly on her
feet sometimes, also she has ocular motor apraxia which basically means
that her eyes do not move side to side very much so she tends to turn
her head to compensate. However the eye consultant at the hospital says
that her eyes are now beginning to move, which is something he has never
seen in all his years in the medical world!
At two years of age she had a grand mal seizure and stopped breathing,
she was resussitated by my wife before the ambulance arrived. She has
had epilepsy ever since but is well controlled on a low dosage of Epilim
and has not fitted since October 1996. She is an incredibly fun child to
be around, is always smiling and laughing and is in love with life,
though she can have mood swings sometimes which the doctors feel are
caused by the fact that she is a very early riser, she wakes around 5am
most days which can be a bit of a bind as she is on the go straight away
and full of energy. She has recently started attending a moderate
learning difficulty school and is doing really well. She is learning to
read and write and can count to 50, she has made lots of friends old and
young and absolutely loves going every day.
Hope everything is well with your daughter and that things keep
improving for her.
Barry and Ashley Dowler
18 Troopers Drive
Romford
Essex
RM3 9DE
England
PS We now have a lovely 6 month old daughter, Katie and everything is
fine with her, she and Sophie adore each other.
FROM Karyn(Jan.1998):
Thanks for sharing information about your lovely daughter, Maki. She is
fortunate to have such a supportive and loving family.
I too have a son diagnosed since birth with ACC. He is now 2 1/2, and a
real joy.
He has been going to Physical & Occupational therapy since he was 4
months old. He has been diagnosed hypotonic. He has been going to
Speech and an Early intervention program since he was about 18 months
old. Presently, he cannot walk unassisted (however he can walk with a
walker for a short period of time, and has the fastest crawl I've ever
seen!). His speech is very limited. He does make distinct sounds for
certain things, which only his family understands, but what we find
curious is that 11 months old he picked up a few words and we thought he
may be advanced in this area, however, he has not picked up much more
verbally since.
However, cognitive signs have been very good. He has learned quite a
bit of sign language and can put 2 or more sign words together to
express himself. He also has a wonderful sense of humor and timing. He
has always laughed frequently and appropriately.
He wears orthotics and glasses (his bilateral eye movement is not
normal, and he has marcus gunn...eye winking.). He was born with a
recessed chin, but he does not have any feeding issues (other than
difficulty handling utensils, which is related to his motor
development). He also has a few other minor facial anomolies.
He was not breathing when he was born, however, he was resuscitated
immediately. Also, 24 hours before birth, the sonogram showed that his
heartbeat would slow when he moved, but doctors did not indicate that
labor had to be induced until the next day...at 41 weeks. We can't help
wondering if these facts have affected his hypotonia even more than the
ACC.
If any of this sounds familiar to anyone reading this, please let me
know (sgkg@bellatlantic.net). Also, I'm glad to share whatever info I
can to those who ask.
Thanks for listening!
FROM Holly and John Fowler(Jan.1998):
Hello - it was wonderful to find your terrific site. We were so
interested to hear of your experiences and hear news of your beautiul
Makai. It just helps so very much to share our stories - we have learnt
so much.
Our gorgeous little girl Katie (aged 15 months - born 12 Oct 1996) has
ACC. Noted with microcephaly at birth, tests at 3 days old revealed
agenesis of corpus callosum, enlarged 4th ventricle and other anomalies,
and suggested diagnosis of Dandy-Walker Variant. This was confirmed by
MRI when Kate was 6 months old. She also has Optic Nerve Hypoplasia,
and although she may be legally blind, her use of vision is continuing
to develop as she is. We feel so very encouraged by all the progress
she continues to make.
Katie has major developmental delays in all areas. She is hypotonic but
developing greater strength in her upper body day by day. Lower body is
much stronger. CP has been discussed but not yet been diagnosed. Our
very clever little girl is really working very hard at lifting her head
when on tummy and can now for the first time, lift her chest and bottom
off the ground during tummy time. Look out crawling - here we come!!!
We are very proud of our little girl and all she has achieved. Each day
brings a new miracle. We belong to the most wonderful support group for
parents of kids with SOD (of which ONH is thought to be a part). Some
of our kids also have ACC. Please take at look at it at
http://members.tripod.com/~roses8/index.html
While you're there
please check out the bios of all our fantastic kids. You'll find
Katie's bio at
http://members.tripod.com/~roses8/katie.html
Our little one also has epilepsy with frequent hospitaliation for
unconrolled seizures and related vomiting a way of life in the past.
Thankfully (after a number of trials!?!) medication has finally
achieved moderate control and given our little girl a much higher
quality of life which was previously just not possible. She has come
alive and is really starting to blossom.
A very happy, contented little girl Katie has been unable to readily
smile in the past. However lately she has been charming us all with
wonderful (though very brief), delightful smiles and what seems to be
the beginnings of a little giggle.
We live in Australia, and as yet have not met other children locally
who face the range of similar challenges to our Kate. Sites like yours
have been invaluable. Thank you! We would love to keep in touch with
you, or anyone else who would like to contact us.
Holly and John Fowler
159 Francis Street
West End
Townsville Q 4810
Australia
Ph: (07) 47 715391
Email: commplus@ozemail.com.au
FROM Stace Harris(Nov.1997):
Hello.
My name is Stace and my son was diagnosed with ACC at birth. He is now eight
months old. He has just learned to really hold his head up good and is
working on sitting up. He goes to physical therapy once/week and his
endocronologist says his hormone levels are fine and he is physically growing
at a normal speed. He even has two teeth and one cutting the surface!
He is very sweet and quiet. He hardly makes a fuss. He sleeps a lot, tends
to catch a cold easy, and he doesn't put pressure on his legs when you hold
him up in a standing position. He kicks all the time and will push off of
something when he's laying down, but I am concerned about walking.
He also doesn't always focus clearly on things. He will almost stare right
past me when I talk, but then suddenly he will look at me like he just
noticed me.
I have been to different doctors and they all have their "opinions".
There are a lot of pluses , but I have come to realize that the most
frustrating thing about this disorder is that it is pretty much a wait and
see what he does kind of thing. Nothing is predictable. I also have a five
year old daughter (healthy).
I have joined Special Kids and Families here and they have general
stimulation classes and support groups. I will write/call ACC Network now
that I have that info.
Please, if you can give me any information I would appreciate it.
I thought maybe with an older child you could help me look for signs of other
things. When was she diagnosed with CP?
Thanks for your time. i appreciate it.
you can email me at: STACE7630@aol.com
Stace Harris
FROM Jeff and Linda Odegaard(Sep.1997):
It was good to see your site. It was also good to see some of the people
We are already writing to posting on it. It can be so hard finding other
parents of ACC children. For the first nine months of our son Matt's life
most of the information we had came from the ACC network. Then we got on
the net and began to learn a lot more right away. After nine months of
surfing we have six other parents who we correspond with, although not as
frequently as we would like. Matt like many other of the children who we
have heard of, was being watched for hydrocephalus. He had a difficult
birth. He was not breathing and had to spend most of his first day on
oxygen. for the first three days he was fed through a tube because he was
unable to coordinate his sucking and swallowing. when he was a few days old
(3 I think) he was given a CAT scan. He was diagnosed with ACC. At one
month he received an MRI and we were told his ACC is complete. Our biggest
fear is of the associated disorders, so far he only has low muscle tone and
moderately severe hearing loss in one ear. He had seizures when he was born
but they quit on their own at about one month. He has always been delayed.
He is currently 17 months. Recently he has really begun to blossom. He has
reached his age group or slightly behind in almost everything except gross
motor skill where he is at 10-11 months, he cannot walk yet but is cruising
well and does not crawl on all fours more than a couple of feet. Four
months ago he was at about half his age in most things. Mathew receives PT,
OT and Speech therapies every week. Like every other parent we have spoken
to we do not know the cause genetics has been ruled out. His mother has
Lupus, although we didn't know it at the time he was born, she has had it
for at least seven years. I think it is related but I guess that is really
not important we are determined to give Matt every opportunity we can. I am
attaching a recent photo, I hope you can read it.
Jeff and Linda Odegaard
odegaarj@erols.com
We are very sympathetic to anyone trying to find out more about
ACC. There is a lot of clinical information available but practical
information from first hand experience is difficult to find.
FROM Jennifer(Jul.1997):
My daughter is 9 1/2 months old & was diagnosed with ACC at 7 months. I
received info from the ACC Network already, however any additional info I
could get on other children who are older would be helpful. Particular
questions I have are: Age of diagnosis & degree of developmental delay and
what age therapy was started; as well as the child's response to therapy. My
daughter is in physical, occupational and speech therapy and seems to be
doing well. When we started (7 months old) her gross motor was at a 1 to 4
month level, fine motor 2 mos. and speech 2 to 3mos. Currently (9 1/2 mos.),
her gross motor is 4 to 7 mos., fine motor 4 mos. and speech 5 to 6 mos.
However, I wonder how she compares to other kids with the same diagnosis.
Jdsmws@aol.com
FROM Amy Pate(Jul.1997):
Hello,
I was searching the WEB as usual finding info on ACC and, came across
your story. It touched my heart. Let me just start by telling you my story.
I was pregnant w/ my first child, in December of 1996, I had a routine
Ultrasound, and, was so happy to find out the sex of my baby girl! Later on
the same night, I recieved a phone call saying "Your baby has shown some
problems." They seen the dark areas on her brain, and dx. it as a condition
Hydrocephalus. I was then transferred to a specialists and, said it seemed
severe I was told she may have serious complications, CP, Blindness, deaf,
mental retardation, and physical imparamints. I chose NOT to abort this was
my moving, lil baby growing inside me! I believed she would not be as bad as
they said, I feel her kick me! (She was dx. at 18 weeks in-utero.) I had an
amniocentisis that came back 100% normal. So, it was congenital. I recieved
US every other week to check her head size. Her head was in "Normal range
size but, in the 80 percentile. At term still the same. I searched the net
and found out LOADS of info on this condition. And, I had great hope! She
was born May 2nd 1997 vaginally! Head circumfrence 35 cm. She was perfect
she kicked(Paralysis- NO!) She held her head up, smiled, stuck out her
tounge. She had the most beautiful shaped head to my surprise and, looked
perfect! Not what I had expected from pics and, info i Accuired! The doc
said see, I told ya there was cases that came fine! She had a CT scan at day
1. And, found her ventricles normal and fluid as well. She was 6' 7 and 18
1/2 inches. They nuero says may have been mis dx as far a s hydr is
concerned, being via US its hard to dx. being it is a image, and the dark
area was actually the missing coprus callosum. They are doing further
research on this since her head seems to be growing a lil fast in there
opinion now that it is 39 1/2 cm. But, I do have a large head myself. She
gets a US on her head next week to determine this. She laughs outload now,
rolls over from her back to sides and vise versa, she has been checked and,
finds her motor skills in arms and legs sronger than average for her age,
They are concerned her neck muscles are a lil behind, and shows problems
cordinating her one eye to track from left to right w/ her other one. She is
going to see an eye specialists. She is starting Pt in visual, and, neck
muscles next week, I do all I can to help her advance herself, even if some
things are not delayed, It doesn't hurt to do things anyway, just make her
more advanced if no problems come about in some areas. She is the best baby!
She does things great for me, comparing to things other babies do, I feel she
is okay. I do notice her one eye every once in a while. Of course I cannot
know all untill she is older since she is only 2 months old. I found your
story very encouraging and, I'm interested in your research and plan to do
more myself to educate people, being I'm studying in these sorts of fields,
and being a "miracle" myself having nuro blastoma cancer and having a 40 %
chance of survival myself and concorring it! At 6 mnths of age! I am
loooking for ALL the info I can about ACC, and,I'm dealing w/ it w/ my lil
angel. My PT are not too familar w/ ACC either and, I would appreciate all
info you may give me to better educate my Ashlee Rose Marie. Thanks so much!
And, I cannot wait to hear from you. Your story inspired me!
Amy Pate
AMYNBABY@aol.com
I'm In Michigan. And, Ashlee is treated at UofM hospital.
Oh ya I forgot to mention sh had an MRI also, showing the same, and, she is
now 10 3 and 22 inches!
FROM Lisa Rismiller(Apr.1997):
I am writing on behalf of my cousin's son, Billy (he is my second cousin), who has ACC. He was born 7 weeks premature after a difficult pregnancy. He was diagnosed soon after birth as he was lacking a good sucking reflex to eat properly. His two years have been difficult with cerebral palsy, slow growth and more eating problems. He has only gained about a pound over the last year, and now weighs around 24lbs at 24 months. He spends a lot of time in physical, speech, and occupational therapy. He is now starting to talk, and says "kitty cat" extremely well, and is pulling up to a standing position! Although he had a slow, difficult start, he is now progressing beautifully!
His slow weight gain and eating problem has become an issue as they are trying to decide whether or not to put in a feeding tube. The pediatrician says yes to improve weight gain, the neurologist says no as his brain may simply not be communicating to him that he is full. My cousin had tried nutritional drink supplements, but eventually went back to feeding methods that worked before. Billy's vomiting episodes have decreased, and he has a weight check at the end of May.
The ACC Network has been so helpful to both Julie and myself. She is working directly with them to network with other parents dealing with this disease. The ACC Network's e-mail address is um-acc@maine.maine.edu
For parents and relatives looking for comfort and inspiration, there is a series of web pages by "The Godmother." For those of you who don't know her, Eleanora Gambino shares her gifts of poetry and art and her inspirational story about her cerebral palsy will definitely comfort. The following poem I sent to my cousin, and it is appropriate here as it provides hope to parents of children with ACC and CP:
By Eleanora Gambino
Slow slow children...
run the race.
Our special children
try to pace
all they do,
all they feel,
to learn
to live
to become real.
First, she tries to count to ten.
Then, she stops and tries, again.
One has learned to lift a spoon.
A task that equals men on the moon.
Another has learned to say a word.
A better sound has not been heard.
And it was he that learned to play
and work with others throughout the day.
With patience and love, he will try
to care for himself, and to get by.
Slow slow children...
How they grow!
Our special children...
What they know!
To love.
To give.
For us to live.
Copyright: Eleanora N. Gambino, May 10, 1995 Written: June 26, 1973 ,
Published: December, 1973 by the Norwalk, CT Board of Education
Regards,
Lisa
FROM Cindy Linfoot(Apr.1997):
Hello:
Please don't think me insensitive, but I am so glad that there are other
parents dealing with ACC. My daughter, Emily, was diagnosed in 1993 with
a partial (2/3) of her corpus callosum, and only this week through my own
efforts on the Internet have I found that there is a name, support group,
and other people searching for answers.
Last month my mother bought a book, "What to do about your brain-injured
child," by Glenn Doman. He is the director of The Institutes for the
Achievement of Human Potenial. This book gives some wonderful
information about the brain and how to help our 'sick' children become
'well' children.
I am open to your correspondence.
Sincerely,
Cindy Linfoot
FROM Matt and Sheryl Trowbridge(May 1997):
Hi,
I found your page on the web and I too have a child with ACC. My
son,Steven, will be three in May and he is delayed in fine and gross
motors as well as speech. He has trouble eating, he doesn't chew yet.
I feel blessed to have him in my life. I don't have much information on
Acc, but I wrote to the ACC network and hope to hear from them soon.
Thank you for showing me the Godmother's page. It really made me feel
good.
Sheryl Trowbridge
mathew@noblecan.org
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