June 10, 2000
Hi, we are John and Kammey Quinn and we're writing to you about our son,
Chandler Quinn. He was born in November of 1998. Chandler appeared to be a
happy, normal baby until he was obviously falling behind on things he should
be doing at certain age points. I began to really worry when he wasn't
sitting up at 6 months. I kept asking the pediatrician if there could be
something wrong with Chandler. She kept telling me I was overreacting and
every baby progressed at different levels. Chandler had a very difficult
time with his bowel movements beginning at 4 months or so. When his
pediatrician would not do anything for him or try to run any tests on him, I
switched his pediatrician to one that I had heard was more aggressive in
terms of caring for infants. After one visit with the new pediatrician, we
had an appointment to see a GastroInterologist(sp?) and had orders for a cat
scan. The GI doctor ran numerous tests all of which came back normal, as did
the cat scan. He did suggest that we see a Neurologist, which we did. The
Neurologist did diagnose Chandler with the distal trisomy. He said Chandler
has a very small fragment on his 10q chromosome that was the cause of
Chandlers development delays. Chandler is 18 months and can sit up, crawl,
and is just beginning to pull himself up. He has only 3 teeth, but he has
seen a dentist and he has a full set of teeth. They are just late in coming
in. We hope that he will be walking soon, but he is nowhere near being able
to walk right now. He can say a couple of words, but not as many as he
should. However, he jabbers constantly and knows how to get what he wants.
He receives physical therapy 3 times a month and speech and occupational
therapy once a month each. We have been told that he will do everything that
other kids do, it will just take longer for him to get there.
Anyone that knows Chandler knows that he is a very special baby. He
is so much fun to be around. He is for the most part, a very happy baby.
His bowel movements do seem to be getting better now that he is able to get
around some. He seems to be ok mentally so far, he is just a little delayed
on the physical development as well as his height and weight.
Thank you so much for putting information out there for the rest of us.
We just learned of Chandlers diagnosis in Feburary of this year and it is
helpfull to know that there is information out there about this chromosome
rareity. I'm sure you feel as I do, that your son is just that much more
John and Kammey Quinn