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Monongahela uncle runs for a cause

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Ryan Mottillo, pictured with his father, Joe Mottillo, suffers from a rare genetic disease, Prader-Willi, which causes constant hunger pangs.

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Justin Tatar

The idea came to him as he was running his first marathon last year.

“So many people were wearing T-shirts,” said Justin Tatar of Monongahela. “I saw them for so many causes, but none of them were for Ryan’s disease.”

So, when Tatar ran his second race last month, the Pittsburgh Half Marathon, he did it to raise awareness for the rare disease his nephew suffers from. In addition to creating T-shirts for himself and his team, he also used the event as an opportunity to raise money for two foundations fighting the disease.

Tatar’s nephew, Ryan Mottillo, has a genetic condition called Prader-Willi syndrome, a malady that is most commonly associated with insatiable appetite. As well as suffering from cognitive and physical growth impediments, people with Prader-Willi syndrome are also affected by a hypothalamic dysfunction that causes them to constantly feel hunger pangs regardless of how much they eat. Constant hunger leads most sufferers to constantly forage for food, scrounging through unsecured refrigerators, cabinets and even rubbish.

Tatar said after seeing the way the disease affected his 5-year-old nephew and his family, he decided he would try to help any way he could.

Melissa Mottillo, Ryan’s mother and Tatar’s sister, said parents of children affected by the disease face many challenges.

“He was born very, very small,” Melissa Mottillo said. “He didn’t feed well because of his low muscle tone. It meant he wasn’t able to suck. It took two hours to feed him 2 ounces.”

Even though Ryan was born only two weeks early, he spent time in neonatal intensive care. Once the family brought him home, they were faced with a new set of problems.

Prader-Willi babies “just sleep the whole day. They don’t cry,” Melissa Mottillo said. “It’s terrifying. I would sleep with my head next to the monitor so I could hear him breathe.”

Melissa Mottillo said her family was lucky because a genetic test diagnosed Ryan while he was still an infant. Many families don’t recognize the symptoms until their children are past the point of obesity.

At age 5, Ryan is now going through a phase of the illness where constant hunger is first apparent. After years of suffering from being underweight due to feeding problems, he has now begun to fixate on when it was time to eat.

“That rules our world,” Melissa Mottillo said. “That’s what the syndrome is. They don’t feel full.”

“They will eat and eat and eat,” said Joe Mottillo, Ryan’s father.

Melissa Mottillo said in extreme cases, this urge to gorge could be deadly.

“They will eat themselves to death,” Melissa Mottillo said. “That has happened.”

Tatar’s fundraising effort went to two organizations fighting to increase research and family support in the region – the Foundation for Prader-Willi Syndrome and the Prader-Willi Syndrome Association of the United States of America. A total of $3,325 was raised for One Small Step, a joint fund set up by the two nonprofit organizations during his marathon drive.

“I wanted to run for a cause,” Tatar said. “We had two goals: to create awareness and raise money to help give some relief to families.”

Tatar’s effort has inspired the family to continue raising money to fight the illness. They said they were lucky because their insurance covered treatments but shuddered to think of the hardships less fortunate families must face.

Joe and Melissa Mottillo have started a fundraising page called “Ryan’s Team” on One Step’s website – www.OneSmallStep.FPWR.org/dw/walking. They’re also hosting a team for the One Small Step Walk that will be held at North Boundary Park and Water Park in Cranberry Township Aug. 17.

Joe Mottillo said it was the least his family could do to repay the community working to combat Prader-Willi. He said various workshops and classes offered in the past, many through the Children’s Institute of Pittsburgh in Shadyside, have been invaluable.

“I hate to use the word ‘therapeutic,’ but to be able to talk to parents who’ve lived through what you’ve lived through really helps,” Joe Mottillo said. “We were able to listen to great doctors, all of them fabulous people.

“I was also able to talk to other fathers of children with this syndrome and know, ‘Hey, you’re not in this alone.'”

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