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Family PictureMommy and Daddy planned Brison and wanted him very much. It did not take long for Mommy to get pregnant with Brison and they found out when Mommy and Daddy were married just 1 mo. Mommy and Daddy were so happy. They were a little worried because they were a little older. Mommy was 36 and Daddy was 39.

Mommies pregnancy went fairly well. At the last 2 mo. Mommy had some spotting and several UTI`s. The last mo. Mommy was very sick and was losing weight. So 10 days before Brison`s due date the Dr. decided that it was time for Brison to come. Brison came into the world after an uneventful delivery. When they placed him on Mommies tummy Mommy said he was too small. Brison`s brothers and sister all weighed around 8 pounds at birth and Brison was 6 pounds 3 oz.

His hair was one of the first things everyone noticed. He had a whole head full of black hair. Even the Dr. was amazed at all the hair he had. When they cleaned Brison up and handed him back to Mommy, she started counting his fingers and toes. Mommy thought his great toes looked odd. She asked the Dr. about them and he said it would go away. His great toes looked like they had an extra joint in them and were a little broad. Daddy thought Brison`s eyes looked odd. We were told that was normal too.

So Brison was healthy and we took him home. At Brison`s 3 mo. check up Mommy discussed with the Dr. that Brison had become awfully constipated. Mommy was breast feeding as she had her other kids and this didn`t seem normal. He said to give Brison some juice. It was also noticed that Brison was not gaining weight well. He only weighed 8 pounds.

The Dr. said not to worry as Brison was healthy and seemed like an awfully happy baby. We took him home and the juice did not work. He was always constipated. Mommy had to give him suppositories and enemas to help him.

As time went on Brison was still so tiny and was not doing things like he should for his age. He rolled over at 5 mo. He held his head up on his own at 3 mo. He could sit with out a prop at 7 mo. but was still a little slumpy. He got into a sitting position by himself at 11 mo. he crawled at 12 mo. At his 11 mo. check up Mommy knew something was wrong and insisted on a referral. At the Peds. Dr. the Dr. Looked at Brison and started talking about dysmorphic features and possible dwarfism and genetic disorders.

Mommy and Daddy were floored. They didn`t expect that. They were sent on to the Geneticist. Brison saw him at 13 mo. He didn`t have any idea, said he was sure Brison has genetic disorder and ran many tests. They all came back ok. So they sent him to St. Louis to be seen at Barns Childrens hospital by a Genetasist there. She didn`t know either. So Mommy found some info on a study in Bethesda Maryland and submitted Brison`s med files and pictures there.

They accepted Brison into their study for children with undiagnosed genetic disorders. They paid for Mommy and Brison to come there. Daddy decided he wanted to come too. So Mommy and Daddy paid for Daddies ticket. Brison had a team of 8 Dr.`s look at him. They asked Mommy and Daddy all kinds of questions and in 20 minutes time they told Mommy and Daddy that Brison had something called Rubinstein-Taybi syndrome. Brison was 19 mo. old. Mommy had heard of it before. Mommy cried. Daddy was in shock.

It took a little bit to get used to it. When Mommy and Daddy got home looked up alot of info and found out it was not so bad. Everything would be OK. Brison is a ray of sunshine and brings light to everyone he touches. Brison been a lesson in love and a blessing to us and we wouldn`t change a thing about this wonderful little man.

.Penny Stevens          Email: briansangel172004@yahoo.com

Brison is a ray of sunshine and brings light to everyone he touches.

List of Brison`s features

Failure to thrive

hypotonia

Talon cusps

Broad and angulated great toes

extra fold of skin on the eyes.

wide spaced eyes

High arched palate

small mouth

does not cry tears

testicles move in and out of scrotum

Broad fingers and thumbs

small thick flat feet

small broad hands

constipation

hairyness

developmental delay

prominant forhead

microcephaly

 

Pictures on top: Brison at 1 hour old, hospital picture, 16 months and 3 months.