Wednesday, May 27, 2015

MOEBIUS SYNDROME IN THE NEWS

A former college football player with Virginia Tech University, who is now starting a career as a football coach, has a son with Moebius Syndrome; read more about it:

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His body might have been in Brooklyn this spring, getting his football coaching career underway at a junior college, but former Virginia Tech wide receiver Dyrell Roberts’ mind was never far from Virginia.
His infant son, Dyrell Jr. or DJ, has been at Children’s Hospital of the King’s Daughters in Norfolk since being born in November after being diagnosed with Moebius Syndrome, a neurological disorder so rare that researchers are unsure of its exact incidence rate, estimating it to be anywhere from 1 in 50,000 to 500,000.
The condition affects the cranial nerves, so DJ can’t make facial expressions as simple as smiling. His chest muscles are weak, so he has needed the aid of a ventilator to breathe since birth. His cleft palate has made it impossible for him to eat on his own, so he has a feeding tube.
But he’s improving, gaining strength by the day. He’s being weaned off the ventilator and has had eye and chest surgeries to alleviate issues. He’ll have more surgeries as he gets bigger and stronger and, if everything checks out, should soon be able to go to his home in Smithfield for the first time.
It’ll be a homecoming of sorts for both father and son, with Roberts returning to Virginia after getting his nascent football coaching career off the ground at ASA College in Brooklyn, New York — a difficult balancing act in life for a first-time father.
“It’s been hard because you don’t really know what you’re going through,” Roberts said. “You have to get on the Internet and do research and all that and try to figure out what’s at the end of the road? What’s the light at the end of the tunnel? You really don’t know.”
The timing made things difficult. DJ was born Nov. 11. Roberts and DJ’s mother Hillary Gomez knew he was having trouble swallowing before he was born, but there’s no test for Moebius Syndrome. As soon as he arrived, doctors made the clinical diagnosis.
At the time, Roberts was still coaching as a co-offensive coordinator at Smithfield High School. It’s where he was a star four-year starter at running back prior to his time as a receiver at Virginia Tech, where he had 1,363 receiving yards in an injury-riddled career from 2008-12 and remains the school’s career kickoff return yardage leader with 1,577.
After a few tryouts with teams in the Canadian Football League, Roberts joined the Smithfield coaching staff in 2013, working as a deputy sheriff for the Isle of Wight County as well. But he always wanted to get back into college coaching, hoping to stay close to home. A few months after DJ was born, an opportunity to be a wide receivers coach arose at ASA College, a two-year junior college.
After consulting with numerous coaching mentors, including Shane Beamer, Bud Foster, Cornell Brown and Bryan Stinespring from the Hokies and his former position coach at Tech, Kevin Sherman, who’s now at Pittsburgh, he accepted the position and got to work in April.
“Everybody kind of gave me the same advice: if you want to go into it, go full speed into it,” Roberts said. “They said no experience is bad experience.”
It did keep him a good distance away from his son for long stretches of time, however. Roberts had never lived outside of Virginia. Now, he was more than seven hours away at an inopportune time, using his free moments to talk to DJ on FaceTime and coming back at least every two weeks to see him.
“Every time I came back, he got bigger, he got stronger,” Roberts said. “I was always coming back to something good.”
DJ is improving by the day. Weighing only 5 pounds at birth, he’s now closer to 20. (“He eats like a champ now,” Roberts said.) While he once needed to be given 40 breaths per minute on the ventilator, he’s between 9 and 11 now. He can open his mouth enough now to take a pacifier. He’ll need more surgeries — fixing the cleft palate is a significant one — but has a chance to go on to live a normal life.
“As time goes on, the older he gets, the stronger he gets and the more he can do,” Roberts said. “So it’s one of those things where the older he gets, the more he can out-grow everything.”
Still, it’s not without significant costs. Insurance covered a lot of it, but DJ will still need home care that could be expensive.
It’s why Gomez’s sister started a Go Fund Me page, which as of Sunday had raised $4,700. DJ’s godfather is Jordan Eason, Roberts’ best friend and former high school teammate who played offensive line at Air Force. He and his wife Cristina set up a fundraiser at Cypress Creek Golfers’ Club in Smithfield on May 31. Registered groups will golf and items will be auctioned to raise money.
“Being from the town that we’re from, everyone knows everyone,” Roberts said. “It’s almost like a big cookout.”
Roberts’ coaching odyssey, meanwhile, is only beginning. Shortly after returning to Virginia following spring ball, he found out he had been hired as the quarterbacks coach, special teams coordinator and strength and conditioning coach at Earlham College, a Division III school in Richmond, Indiana.
If all goes to plan, he’ll start there in June, continuing to juggle a career with unusual time demands and fatherhood, a difficult task, but one made better by DJ’s improving condition.
“It’s been tough,” Roberts said, “but it gets a lot easier.”

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