‘Run 4 Ryan’ event to help 6-year-old with rare dis­or­der

Maryland Independent - - Front Page - By AN­DREW RICHARD­SON arichard­son@somd­news.com

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.

STAFF PHOTO BY AN­DREW RICHARD­SON

In the DePaulo house­hold, their daily mis­sion is to make Ryan smile. His sis­ter, Leah, 7, tries to make him laugh with a tickle at­tack. Ryan has been di­ag­nosed with Pitts-Hop­kins syn­drome, which causes him to suf­fer from seizures and day-time ap­nea. A 5K run to help his fam­ily raise money for med­i­cal care is sched­uled for to­mor­row, Satur­day, at Grace Brethren Chris­tian School in Clin­ton.

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