‘Run 4 Ryan’ event to help 6-year-old with rare disorder
When it comes to taking care of its beloved Ryan, the DePaulo family knows the routine. Yet no day is the same. He has been diagnosed with a rare developmental disorder. Ryan was one of approximately 150 documented cases of Pitts-Hopkins syndrome worldwide at the time and the first to be diagnosed at Children’s National Medical Center in Washington, D.C.
He was 10 months old when he began having frequent seizures, between 20 to 100 times a day. In addition, Ryan suffers from daytime apnea. Without warning, he will begin hyperventilating just before he stops breathing involuntarily and goes limp, falling in any direction without being able to brace for the impact.
“He’ll stop breathing for a second, and then his body will just become limp. It’s almost like he’s fainting, or passing out. He kind of gasps like a fish out of water for air, but then it’s over, just like that,” said Ryan’s mother, Rachel DePaulo. “The whole process from him hyperventilating to finishing is probably like 15 to 30 seconds, depending on the episode.”
Caring for Ryan, who is now 6, is difficult, but Rachel and Michael DePaulo have two helpers — Ryan’s brother Shane, 9, and sister Leah, 7, who play with him, tickle him and read him books at night.
A school resource officer at La Plata High School, Cpl. Michael DePaulo was surprised to learn that a family friend organized a 5K run fundraiser to help raise money for Ryan’s demanding needs.
Those who want to “Run 4 Ryan,” or walk, are encouraged to join others at Grace Brethren Christian School tomorrow,
Saturday, April 30, from 2 to 4 p.m. With all proceeds going directly to Ryan, registration is $20 for adults and $12 for ages 12 and younger.
In 2010, when Ryan was examined at Children’s National Medical Center, the doctors didn’t know much more than the DePaulos did.
“They didn’t have any research for us, so basically they just gave us this pamphlet they got online,” Rachel said. “So, we’re kind of all learning as we go along.”
“There was nothing for us to go off of,” Michael said. “It wasn’t like, ‘Hey, you can do X, Y, and Z.’ It was, ‘Hey, sorry. We know nothing.’”
About two years ago, Ryan developed the daytime apnea. And with the lack of research on Pitts-Hopkins and no practical remedy, that made things even more difficult.
“There’s really no medicine,” Michael said. “We’re all supposed to be breathing. He’s got this generic disorder that stops him from breathing; what are you supposed to prescribe him?”
The DePaulo family has been learning as they go, but “safety is our No. 1 priority,” Rachel said.
Money raised during the fundraiser will help install a ramp and specialized stairs to help keep Ryan safe at home, as well as safety mats, seizure helmets, and other equipment to protect him from falling. In addition, the funds will also help pay for Ryan’s medical, transportation, and care-taker expenses.
Though Ryan is noncommunicative, he expresses himself in other ways.
“Ryan is very loving. He loves to hug people,” Michael said. “He doesn’t have any stranger-anxiety. He might not know you, but he’ll grab you and squeeze you, hug you and kiss you.”
In the DePaulo household, the daily mission is to make Ryan smile.
“We’re always trying to get him to laugh,” Michael continued. “Trying to tickle him, shaking a toy, doing something to get him to smile and laugh. When he sees me or Rachel sitting down, he loves to come up and just grab us by our necks and squeeze us and give hugs.”
And they couldn’t do it without Ryan’s brother and sister.
“They’re a great help, Shane and Leah,” Michael said. “They take care of him. They know the routine. They’ll feed him. They’re really good at doing that.”
“My daughter always likes to read to him. They’ll read books together every night.”
For those who aren’t able to participate in the 5K run/walk, but would like to help Ryan, donations can be mailed to the church at Grace Brethren Benevolence Fund c/o Ryan DePaulo, 6501 Surratts Road, Clinton, MD 20735.