Local Family Bringing Awareness to Angelman Syndrome - KTUL.com - Tulsa, Oklahoma - News, Weather & Sports

Local Family Bringing Awareness to Angelman Syndrome

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An Owasso family is hoping to turn a tragic event into helping other families. A year ago, Colby Goldstein died in an accident. The toddler suffered from Angelman Syndrome which affects one out fifteen thousand births. It's a rare genetic disorder that can affect motor skills, learning capabilities and can cause lack of speech and seizures. So, this 5k and CrossFit challenge was a way to give back to a syndrome close to the Goldstein family. 

"It helps us remember Colby and honor him. He taught us all so much and if we can give back to the families. I know we don't have our angel anymore but all we can do to help other angels," says Colby's mother, Arami Goldstein. 

More than sixteen thousand dollars was raised for research to help find a cure and the will donate to Stone Canyon Elementary special needs program, that's where Colby was a student. But the most important place this money will go is to families that need it to pay for therapies because Goldstein says it's very expensive and most angel's have several different therapies each week. It takes a blood test to find out if your child has Angelman. 

"I didn't know what to expect. It was a long road. He wasn't diagnosed until two days before his second birthday. I was told his first two years of life he would catch up and mothers just know that something isn't right," says Goldstein. 

Colby was remembered as someone that always had a smile on his face and loved to play. That sparkling spirit is why Goldstein wanted to being awareness to Angelman Syndrome. 

"No matter what your disability is, is to not judge a book by it's cover and even though Colby couldn't speak, he taught me more in his four years of life, than many people I have ever met," says Goldstein. 

 

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