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Families Raise Awareness About Angelman Syndrome

    Created: 11/20/2006 4:40:54 PM    Updated: 11/27/2006 1:22:21 PM
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WKYC-TV Video Report

By WKYC-TV Cleveland

CLEVELAND, OH -- A happy child is a blessing for any parent. Two Ohio families can attest to that. Their children laugh often, and smile almost non-stop. But that is because they live with a rare condition, called "Angelman Syndrome". It is so rare, that some doctors have never heard of it.

The photo albums tell the story of Corbin Titus, a happy smiling boy whose first few months of life were blissful, and uncomplicated. His mother Robin remembers, "he was home for a month, and rolled over so we thought we got an early developer, he was really taking off". But as the weeks and months passed Robin Titus noticed Corbin wasn't progressing. Corbin was 15 months old before he could sit independently, and 21 months old before he could crawl.

By then doctors had diagnosed Corbin with Cerebal Palsy, and decided the little blonde haired, blue-eyed boy was also mentally retarded.

But that first diagnosis was wrong. And when the correct diagnosis did come years later, it wasn't a doctor, but another parent who first delivered the news.

Robin says the woman walked into Corbin's classroom and said, "'Oh, my God. What does that child have?' I said CP or he's mentally retarded. And she said, 'that kid's got Angelman Syndrome'. Her daughter has Angelman Syndrome, and they live one mile from us".

Angelman Syndrome is named for Dr. Harry Angelman, the physician who first diagnosed the condition. It is a genetic disorder, due to an abnormality of the 15th chromosome.

Traits common among people with Angelman Syndrome include, developmental delay first noticeable around 6 months of age. Seizures. 80% of children have lighter features, blonde hair and blue eyes, although Angelman Syndrome can affect children of many different ethnic and racial backgrounds. Most children never speak, although they understand language. And they have a telltale walk as well.

But what makes Angelman Syndrome children unique are their happy personalities.

Robin Titus says of Corbin, "he has a huge personality, a lot of children have a huge smile and they are very happy, and have an unusually happy demeanor". Corbin is 17, 11 years old than Caleb Ferguson. But the similarities between them are striking,

"Caleb is one of the most loving children that you will ever meet. His body is very sensitive to touch, he assumes that you are coming to give him a hug, coming to touch him, so he starts to giggle", says Caleb's father, Darryl Ferguson.

Like Corbin, Caleb has Angelman Syndrome too. A triplet, whose siblings, including another older brother, are not affected, Caleb is just starting to feed himself and walk on his own.

"We were told there was a possibility that Caleb might never walk. There are some children who have verbal skills, even though they are minimal which is exciting that maybe one day he'll call me mama", says Jennifer Ferguson, Caleb's mother.

Caleb and Corbin's families say they want to teach people about these remarkable children they call "Angel Kids". "You guys have had your head rubbed today, it's just his way of greeting people. He doesn't understand hating. He just loves everyone", says Bob Cochrane, Corbin's stepfather. "The one thing i would want to share with another parent, whose child has Angelman's is that they have a gift. The child has a lot of courage, the child will make them stronger, the child will continue to be a blessing in the the lives if everyone that they touch", says Darryl Ferguson.

Angelman Syndrome is still relatively unknown, even in the medical community. Both families tell us, they've had to educate doctors about the condition, during trips to the emergency room for seizures. But Corbin Titus's parents are trying to raise awareness about Angelman Syndrome, and help other Angelman families through a foundation they've started. Angelman Syndrome is rare, but doctors can't say how rare. That's because a genetic test to diagnose it, is only a few years old. We do know of 18 cases in Northeast Ohio.

©2009 WKYC-TV Cleveland. All rights reserved. This material may not be published, rewritten, or redistributed.



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