Please meet
Johnny and Alex W.
July 26, 1995 September 5, 1997
This is Johnny. He is a ten year old boy who has gone through many medical proceedures. He has an unknown genetic syndrome, growth issues,
megacolon and other health concerns.he is diagnosed with
Unknown Genetic Syndrome.
Because of these issues he is closely monitored by doctors.
Johnny started out his life as a big baby and when he was born he
weighed in at 10 lbs 14 oz baby in 1995.He had low blood sugar due
to his birth weight.
In his first two years of life he was diagnosed with ptosis and dx with
global delays of 25 % +.
He started therapy and at the end of first grade he graduated from
Occupational Therapy and from speech by end of 2nd. grade.
By the time he was 8 yrs old he had gone 18 months with h no growth and was then diagnosed with delayed bone age of 2yrs +. He also dx with megacolon which is being treated with high doses of laxatives.
The shockin and surprising side effect of the laxatives is that he seems to be growing without hormone shots.
No idea why but the Doctorsrs are keeping the levels and Johnathon is seen every 3 months.
At the end of 3rd grade it was marked the end of special ed services.In fourth grade he started as a D- student and ended as a B student.He also started having acid reflux and is very tired of doctors and being indifferent.
He is constantly being watched for symptoms which appear yearly. At this point in time he has gone though so many medical proceedures we have opted to just wait and see what symptoms and disabilities develope without doing scans and vial after vial of blood. So for now he tries to be a normal little boy enjoying all the things boys do, From cars to trucks to video games. Johnny's had two surgeries so far and tends to become ill easily. Please keep him in your prayers that he stays healthy and fights off any illness that pushes its way into his fragile body.
Mail can be sent to Johnathon at
P0 Box 586
Custer WA 98240
This is Alex, Johnny's brother. He was born at 9 lbs 15.5 ozs in 1997 and started developmental testing at 4 months old. he is diagnosed with Unknown Genetic Syndrome.
He , like his brother had speech problems and started special preschool for speech and behavior.
In the summer of 2004 he was DX with Phonological disorder, Apraxia and expressive Language disorder.This is more then a speech issue.This is a processing/retaining /memory issue.
Alex is being closely watched due to his older brother Johnny having an unknown genetic syndrome the Doctors feel run in boys.
He has issues about new people, being in group settings. He was tested for austism but the Dr felt he did not have that but does have some traits.He was given the dx of phonological, apraxia, expressive language disorder in the sereve form.
His speech conitnues to be a major issues and has problem with retaining informations. This is more then a simple "speech" issue. The brain is not sending the right signals. Processing, retaining, short & long term memory is affected but to what degree is unknown due to lack of understandable speech.
Without proper support he is likey to fall between the cracks. His issues are not widely known or accepted so very few if any resources are open to a child like him and Johnny.
Like most kids he enjoys getting mail to cheer him up so if you have time and want to make a difference in a little boys life please address mail at the following address.
Mailing address
PO Box 586,
Custer Wa 98240
A small gift or letter will cheer up these children. Please pray
for them and let them know there are caring people in the world.
