Chris is a delightful boy, born in Normal, Illinois. He was delivered by C-section because of his
breech, feet first position. He is my only child.
Mayo Clinic made the CDGS diagnosis when Chris was 2-1/2 years old. Dr. Jaeken says he’s a
Type 1, but needs lab verification.
The early 2-1/2 years were a whirling blur of fear and helplessness with a myriad of doctors,
hospitals, tests, and surgeries. Chris’ diagnosis came a week before Christmas in 1992, while he was
in the hospital for a huge “stroke-like” seizure. It was a time to finally pour out the pent-up grief
over not having a perfectly normal child, and a time of uncertainty for my child’s future. There was
a sense of relief in knowing what I was dealing with.
It seemed that Chris was taking twice the expected time for each developmental milestone. He rolled
over at 8 months and sat unsupported at 1-1/2 years. He finally made eye contact with Mom at around
that time.
At age 3 Chris started pre-kindergarten special ed. He went all day, riding the bus to and from school.
Therapies are integrated in his classroom, including speech, O.T. and P.T. This fall he starts
kindergarten with 20 regular kids and will share facilitation by a special ed teacher with another boy.
Chris loves school and we’re all exited by his accomplishments. He knows around 30 words, uses
signs and seems to understand most everything. Imitating behaviors is a big kick for Chris and he’s
quick if there’s mischief on his mind. He’ll feed himself for part of a meal.
Just last year Chris became interested in eating; although food has to be chopped small for him. He
still is very small - only 31 lbs. and 40” long. His legs are very thin and we’ve noticed a loss of
strength in them. (He first lost strength after the seizure).
The description written by Rolf Odselius on CDGS social function fits Chris so very well: “The children
are friendly, positive, they have a strong will and they are not aggressive.”, with emphasis on strong will.
Chris likes people - he’ll wave “hi” or shake a hand. His favorite activities are “reading” books; walking
in his walker; climbing things; opening and closing doors of all kinds; and taking everything out of
Mom’s drawers and cabinets.
Chris is very fond of his Nanna and Papa and they are a great support for us. It is their E-mail address
with my name and they then fax everything to me.
A month ago, I knew very little about CDGS or if research was underway. I was in touch with the
DeVries, who also go to Mayo. I am so happy now to be in a network of families to share information and
support. We’ve come a long way in a very short time and I hope we can accomplish alot together.
eff: 1998