MDA research gives high-school grad new lease on life

ANCHORAGE, Alaska — We begin our week-long series leading up to the Muscular Dystrophy Association’s Labor Day telethon with a look at one of the many people it’s helped: Luke Delia, a teen who deals with muscular dystrophy not just on Labor Day, but every day of his life.

From his carefree younger years at MDA’s Summer Camp to the green pastures of farmlife at home in Palmer, Luke Delia is living a full and happy life.

“I think it's the best year of the summer, and I look forward to it every year,” Delia said.

Misty VanderWeele, Luke’s mother, remembers the shocking news she got when he was just 4 years old -- news that would change their lives forever.

“It was, like, the worst thing that ever happened to me up to that point,” VanderWeele said.
   
Delia’s diagnosis of Duchenne muscular dystrophy cast his family onto  the ebbs and flows of grim statistics.

“I felt like I was really on a turntable, spinning around, around and around,” VanderWeele said.

The diagnosis hasn’t dampened Luke's spirits, though, and now he’s reached a milestone his family hadn’t thought possible since that not-so-optimistic early prognosis: graduating from Colony High School.

“Unbelievable -- I can't even believe that I'm here. It's an incredible experience I never thought I'd have,” VanderWeele said. “Well, they told us he wouldn't live past 14 and we'd be lucky if he was 16, and so you gear for that, you try to protect your heart and you wait for the other shoe to drop all the time.”

“It’s very amazing -- I'm definitely proving the doctors wrong,” Delia said, laughing.

It’s an emotional moment for Delia's family members as they come together to celebrate the unexpected for a very special 19-year-old.

“He's brilliant, for one,” VanderWeele said. “He has a heart of gold and he is strong, and he has more determination than I've seen anyone display in my whole life.”

New findings and improving research have changed Delia’s prognosis over time, and continue to improving the life span and quality of life for those battling many forms of muscular dystrophy.

“It's amazing that I may have a longer future than what they suspected when I was 5,” Delia said.

“There's so many now: moms on the computer every day, telling me there's something new that they find,” VanderWeele said. “There's really no words -- there's no words to describe that I feel so blessed.”

For Delia and his family, the celebration goes way beyond the pomp and circumstance of simply graduating. They’re thrilled to be part of what they thought was way out of reach.

“I see college and my own car, lots of things -- it's very exciting,” Delia said. “It means the whole world, making it this far.”

Join Channel 2 for the MDA’s Labor Day Telethon, starting at 7 p.m. Sunday and running through 5 p.m. Monday.

Contact Maria Downey at mdowney@ktuu.com