3/17/12

Research that benefits children--"Our baby"

"Our baby" is a little boy in our center that just recently celebrated his 2nd birthday.  I first met him last November, he was @ 9 mths old at the time and extremely small but he had the biggest smile in the world.  Initially I was surprised that at 9 mths he was so tiny, unable to sit up by himself, unable to hold his own bottle and that he was preparing to spend his first Christmas in the hospital for the second surgery of his young life.  That, of course, was before I knew that "our baby" suffered from Williams syndrome and had major cardiac issues.  This was brand new for me because I had never heard of this condition but his mom, who works in our center, very patiently explained his condition and all that he had gone through.  When she took off to prepare for his surgery and the recovery I was just as concerned as everyone else.  He had a very difficult time in surgery and ended up in a coma.  It was a very intense time but he came out of it and when he did it was like he was starting all over.  He spent his 1st birthday in the hospital and had to basically learn everything all over again.  When mom finally returned to work with him he was 14 mths old and barely crawling.  It was great though because he would scoot around the room and one day he started pulling up and before we knew it he was walking.  As his second birthday approached it seemed as if he would be spending it in the hospital as well as he had gotten sick again.  Luckily it wasn't major, a few days rest and quarantine and he had a huge celebration the following week.  "Our baby" is now the terror of the center and doing great but I know that it is only through research that doctors know how to take care of him.  Williams syndrome is a genetic disorder so research is a key factor.  There are also other conditions associated with Williams such as cardiac and cognitive conditions which are further understood through research.

4 comments:

  1. What a beautiful story! I have never heard of William's syndrome. This is a wonderful example of the benefits of research! I'm sure "Our Baby's" mom is thrilled to have him the "terror" of the center! Great post!

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  2. I loved your post!! I recently met a young adult with Williams syndrome--she came with her mother to pick up a preschool student. Before I met this young woman, I had never heard of Williams syndrome and instantly Googled it. Now I read your entry and you are writing about Williams syndrome! I had to reply to a beautiful story. I have a special place in my heart to children with disabilities and my research is focused on Down syndrome. Thanks for sharing!!!

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  3. This is truly inspirational. I sing high praises for educators that take time to be patient with any child that has a disability. It isn't always easy, but these children need to have strong supports in school and home. Without it, they will suffer more than one could know. It is very important that research continues for children just like the one in your center.

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  4. Very inspirational story. I had never heard of William's syndrome until I read your blog. What a strong little guy he is! Research can be a wonderful thing! This little guy is truly a miracle and I'm sure that as he grows he will touch many other lives. Great post!

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