Williams Syndrome is a rare genetic condition. So rare, in fact, that few people have ever heard of it.
Of about 8,000 newborns, only one will have it. It is a neuro-developmental disorder characterized by a distinctive facial features, and an unusually cheerful demeanor and ease with strangers.
But it comes with its complications. Tifton resident Kelley Bedore has a 4 year old son with Williams Syndrome.
Which is why she started The Williams Syndrome Family of Hope, to raise money for families who endure the same financial burdens her family does.
If you should meet a child like Dawson, you won't likely forget their unforgettable warmth and happiness.
"They have something called a cocktail personality, they are friendly so the minute you meet, Dawson today, he will come and hug you and he will want you to hold him, and he doesn't know a stranger," says Kelley Bedore, Dawson's mother.
It is the type of personality seen only occasionally beyond the world of Williams Syndrome.
"They look at life in such a happy way, even though they are in pain and they are fighting everyday and so many different issues," says Bedore.
Williams Syndrome is a neuro-developmental disorder characterized by distinctive facial features, such as puffy eyes, spaced teeth, and button noses.
"I knew something was wrong but I didn't know what, as a mom you know, I think every mom knows from the get go there is something not right," says Bedore.
Dawson was diagnosed at 2 and a half years old. She says early detection is extremely important so you can start treatment as soon as possible. The most common symptoms of Williams syndrome are mental disability and heart defects.
"A lot of families don't have their specialist in town, we don't, we go to Atlanta, we have ten specialist that we see, so we are back and forth, so you have to think about the gas and food and overnight stays," says Bedore.
The financial burden adds up. Which is why she started the Williams Syndrome Family of Hope, a national non-profit organization that raises money for research and families in need.
"Therapy is huge and very important and some insurances do not cover the type of therapies these children need, such as hypnotherapy, music therapy, swim therapy," says Bedore.
The foundation gives them a platform to get out and help those families lesson the emotional and financial burden.
They are holding their first annual Williams Syndrome Family of Hope 5k and 1 Mile Fun Run on March 10th in Tifton.
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