Cortland family raising four children with rare, debilitating disease with no cure

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CORTLAND - It's playdoh and iPads on a Friday night in the Jones home in Cortland, Ohio.

"Every day is a whole new scenario," laughs Melissa Jones, mother.

That's because all four kids, 17-year-old Andrew, 16-year-old Christina, 15-year-old Ryan and 13-year-old Ashley have a rare genetic disease called Angelman Syndrome.

"They are happy, pleasant but they can't function in a normal environment. They are not able to take care of themselves," said Mark, father.

"I will have to take care of them for their rest of their lives," added Melissa.

Melissa and Mark say they knew they wanted a lot of kids when they got married 24 years ago.

"I had a thing, I wanted to have all the kids we were going to have by the time I turned 30," said Melissa.

They had two typical kids first, Danielle and Matt.

But their next four kids had developmental delays, did not talk, and even had seizures.

Melissa says pediatrician after pediatrician dismissed her concerns.

"I finally switched doctors to Dr. Scher with University Hospitals in Cleveland. He was such a great doctor. He suspected it was going to be Angelmans," said Melissa.

The syndrome is so rare that it occurs in one in over 15,000 live births.

It is caused by a mutation in the UBE3A gene.

"How the genetic doctor explained it to me is that I got the gene from dad. My dad had me and my sister. And I am the only one who had Angelman kids," said Melissa.

All four teens attend special education classes at Liberty High School, which is about 20 minutes away.

They've learned how to communicate through their iPads and iPhones, especially Andrew.

"He uses the Proloquo app from the iTunes store. They have a hard time expressing themselves. But with these pictures and videos, it's so much easier for them to manipulate them and find out what they want to tell me versus trying to find a word," said Melissa.

Melissa says her two other children did not inherit the gene and will not pass it along, either.

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