CORTLAND, Ohio (WKBN) – February 15 marks International Angelman Day, raising awareness of a rare neuro-genetic disorder many have not heard about. It’s a disorder that the Jones family lives with every day.
Mark and Melissa Jones, of Cortland, have six children. Their four youngest were diagnosed with the Angelman Syndrome.
According to the Angelman Syndrome Foundation, the syndrome occurs in only one in 15,000 live births. Signs and symptoms start to appear in early childhood, and can include developmental delays, not talking, seizures and a happy demeanor.
In this case, Melissa got a defective UBE3A gene from her father. That mutation meant she had a 50-50 chance of passing it onto her kids. The family invited 27 First News Anchor Erika Thomas into their home recently to witness how they are beating the odds
“When I found out it was Angelman Syndrome, it was just kind of the light bulb went on and you go, ‘Oh, that’s why!'” said Melissa Jones.
Jones said she didn’t know some of her children, ranging in ages from 13 to 23, had Angelman Syndrome until just four years ago.
“It’s unsettling. Like, you know that something’s still not answered and not right,” Melissa said.
Oldest son Matt, 19, still lives at home. Melissa describes him and daughter Danielle, 23, as typical. Their children, Ashley, 13; Ryan, 15; Christina, 16, and Andrew, 17; were diagnosed with Angelman Syndrome.
“I think sharing it with other people so that they see, you know, you can still stay together. As a dad, it’s a tough thing to go through,” said Mark Jones.
“It’s exciting when you get the ‘firsts,’ but once you have a child with special needs, you realize all those little things are great things,” Melissa added.
Some of the kids babble, some not as much. So communicating basic needs can be hard, but they are working on it.
Andrew uses an Apple iPod to say what he wants. Devices help the kids express themselves, like when Melissa locked the family out of the house by mistake.
“He’s typing on his device ‘Uh oh, this is bad,’ and the other one, this one found the iPod touch, and he’s hitting this one song ‘It’ll be OK. It’ll be OK,” recounted Melissa.
It’s clear the children understand what’s going on, even if they can’t talk. And with technology, that may become reality.
“I would love one day for them to be able to talk to me, like have a back-and-forth conversation,” Melissa said.
But for now, they will continue smiling, laughing, taking pictures and filling the room with undeniable love and happiness.
“I can’t imagine walking out on that, can’t imagine leaving her alone with it, and I love my kids. I just love them. I wouldn’t change a thing,” Mark said.
Mark says a cure is possible down the road but likely not in time for his family. Gene testing is available to get a diagnosis.
The Jones children go to Liberty Schools, where each one has an individualized education plan to focus on their needs.
You can learn more information about Angelman Syndrome here.