New standard
Chef to compete in 50-mile ultramarathon to raise money
Derek Stevens and his wife, Marie, didn’t think too much of the high-pitched, kitten-like cries coming from their newborn daughter on a cold February day eight years ago.
Helena had been born early, after all, and was so tiny — she weighed less than 5 pounds — that the longtime chef and owner of Union Standard restaurant could hold her in one hand.
“It was, ‘Oh, listen to her cute little cry,’” Mr. Stevens recalls, adding, with a wistful smile, “It was adorable.”
Then came Helena’s 2-month checkup and the devastating news — her mewing was a sign that something was terribly wrong.
Helena had cri du chat, which in French translates to “cry of the cat,” a rare genetic syndrome that causes a wide range of physical and mental impairments. It’s caused by a deletion on the short arm (p) of the fifth chromosome (5), so it’s also commonly referred to as 5p - (five-p minus) syndrome.
Less than 60 babies a year in the U.S. are diagnosed with cri du chat, and the challenges are many. Along with mild to severe cognitive, motor and language delays, affected children also can display behavior problems such as hyperactivity, impulsiveness and hyper-sensitivity to sound. A small number are born with serious organ defects and other life-threatening conditions such as heart problems.
The Crafton couple found a lifeline in the nonprofit 5p- Society, founded in 1986 to spread awareness and provide support for families. After giving up smoking, Mr. Stevens also found solace in running, just a few miles when he first started in 2011, but eventually with such drive and mental toughness that in 2014 he completed the Pine Creek Challenge, a 100-mile trail run through Pennsylvania’s “Grand Canyon,” in 27 hours.
On Nov. 18, the 43-year-old
will again push his body to its limits when he competes in the JFK 50 Mile ultramarathon in Western Maryland. But his goal isn’t just to beat lastyear’s time of 10:30:06.
He’s also running a crowdfunding campaign on Razoo to support the 5p- Society’s national conference to Pittsburgh on July 26-29. It will be held at the Marriott City Center, Downtown, and is expected to draw about 125 families from across the U.S. and Canada.His goal is $15,000.
“I was going to do it anyway,” he says of the race. So seekingdonations on behalf of an organization that’s done so much for his and other families was the easy part. As for volunteering to be one of the conference’s co-chairs, he’s hoping his deep roots in the hospitality industry, paired with an even deeper love for his native Pittsburgh, will workits magic.
Besides, he jokes, “it can’t be harder than opening a restaurant.”
Registration fees only cover the conference’s Saturday night banquet. So funds raised will help pay for participants’ meals, gift bags and sibling and family outings, including a ride on the Gateway Clipper.
The conference also will featureprofessional speakers and panels that allow parents to brainstorm and share strategies for coping, says cochair Johnna Sleith of North Huntingdon.
Her son, Derek, was diagnosed with cri du chat in 1995, before information was readily available on the internet.The conference, she says, is a much-needed way to help parents feel less isolated.
“In the beginning especially, it’s very hard when your child looks normal and is throwing a tantrum on the floor,” she says. Whereas mostpeople are familiar with autism or Down’s syndrome, not so with cri du chat. “You alwaysget the looks.”
Helena was 5 when the Stevenses attended their first 5p- conference, in Indianapolis, on the recommendation of a friend of a co-worker at Eleven, where Mr. Stevens served as executive chef for 10 years before opening Union Standard. The experience, he says,was amazing.
“You meet and instantly have a bond with people from allwalks of life,” he says.
Among people who are facing similar challenges, “It’s OK to let your guard down,” he says, and siblings — including Helena’s brothers Desmond, 14, and Gavin, 12, — get to unwind and have fun, too.
As for the race? Make no mistake. Running ultramarathons, where much of the courseis on rocky surfaces far from civilization, is hard. Especially when you have to fit training around your work schedule and you have a history of atrial fibrillation. (He sometimes runs home after lunch service and back again beforedinner.)
But the momentary pain is nothing compared to the challenges 5p- families go through on a daily basis, Mr. Stevens says.In both, “you have to just keepmoving.”
Most children born with 5p- syndrome can expect a normal life expectancy. And with early intervention and therapy, many kids who not so long ago would have been institutionalized make remarkable progress. Helena is thriving with assistance in her third-grade classroom at Craft on Elementary.
Just last week she received a dictionary, and “she’s so excited,” says Mr. Stevens. “She’s a vibrant 8-year-old that amazes us every day with her enthusiasm, affection and freespirit.”
In addition to Mr. Stevens’ fundraiser at razoo.com/story/Cxofbg, the 5p- Society is doing two local fundraising events: a paint night at Bushy Run Lions Club in Claridge on Nov. 17, and a craft/vendor show at Clelian Heights School in Greensburg on Dec. 2. Infomation: fivepminus.org or 562804-4506.