‘IN YOUR FACE’

PALMER — Luke Delia will cross the stage with the rest of Colony High School’s Class of 2010 on May 11 with lofty dreams and goals. It’s a future the 18-year-old was never expected to have.

Delia suffers from Duchenne muscular dystrophy, a degenerative disease that attacks the body’s muscles. DMD usually begins exhibiting symptoms early in life and is always fatal. When Luke was diagnosed at age 4, mom Misty VanderWeele was told he’d be fortunate to live past 14.

“There is no cure for DMD and they were telling me that 14 or 16 years old was his (life expectancy),” she said. “They said he’d be lucky to live that long.”

But he did. Although the disease took his ability to walk by about 10 years of age, Luke went through major surgery about four years ago to install two rods to support his spine. His muscles had degenerated to a point where Luke couldn’t hold his torso up and his ribs were compacting down onto his internal organs.

“That was when we really realized how scary this is,” Misty said. “I mean, we were scared anyway, but when he had this surgery, it took them a little longer than expected. It was supposed to take six hours, and instead it was nine. Those last hours were hell.”

Since that surgery, Luke said his life has improved immeasurably, although DMD continues to ravage his body.

“I was about 12, I think, when I first realized (how serious DMD is),” Luke said. “I remember just wondering if I’d be alive at the end of high school. I had so many different thoughts.”

Then, finishing high school was a major life goal.

“Now I realize life’s going to be more than that,” Luke said, adding he now allows himself to dream of a future most of his classmates may take for granted. He wants to attend college and study engineering, architecture or writing.

“It’s kind of the unknown,” he said about his goals. “I may be able to drive one day.”

He also plans to travel to Corpus Chrisi, Texas, in June for a treatment that has exhibited some success in slowing — and in some cases reversing — DMD symptoms. Called STS and developed by Dr. Donald Rhodes at South Texas Innovative Medicine, the treatment targets certain pressure points on the body to stimulate nerves and muscles at the cellular level.

“I don’t want to hope for too much, because then you get your hopes up too high and you can be disappointed,” Luke said. “I’ll take any (improvement), but I’ve just got this feeling that it’s going to help.”

‘Wake-up call’

Luke’s diagnosis was a blessing and a curse, Misty said. On one hand, she finally had an explanation for the symptoms her young son had been exhibiting. On the other hand, the confirmation of DMD, at that time, was a slow death sentence. It was also the kick in the rear she needed to become a more focused parent.

“When he was diagnosed, it was my wake-up call,” she said. “I was single, partying, kind-of bouncing around and going nowhere. I was a good mom, but I didn’t really have a plan. They always say, ‘I didn’t plan for DMD.’ Well, there was no such thing as a plan in my life.”

Misty began learning all she could about DMD, and somewhere along the way her son became her hero. That inspiration came to a head this past September when Luke was hospitalized with influenza and pneumonia.

“That was a close one and really scary,” she said. “Luke was so scared, all he could do was talk, and I just needed to sleep. I was like, ‘Luke, please be quiet. Give me one hour to close my eyes and just sleep.’ And he’s just talking and talking and talking. He finally quiets down and I’m right at that edge of sleep, and he says, ‘Mom, I love you. I don’t know what I’d do without you.’”

Although scared, Luke said he tries not to dwell on his own mortality or the possibility his life expectancy now may not be much past his 30th birthday.

“I don’t let that get in my way at all,” he said. “I don’t think about that. I’m moving on. We’re doing everything to prolong my life, and I’m hopeful this treatment may extend it.”

The different one

Although now 18 with a more mature outlook on his situation, Luke admits the ending of his career as a public school student is more enjoyable than the beginning.

He was put into special education classes in elementary school because of his physical limitations, Misty said. That continued through middle school and into his first year of high school, when a counselor at Colony noticed Luke is mentally sound and could handle a regular load of classes.

Because he uses a wheelchair and has had progressively less movement in his extremities, people often jump to the conclusion that Luke is mentally challenged as well.

“A lot of people think I’m mentally not there too,” Luke said. “It’s very frustrating. It’s like, for some of them, I’m definitely going to prove them wrong when I graduate. … There are some at school who are totally scared of me. If I talk to them, they’re like, ‘Oh my gosh,’ and get freaked out. Then there are some who look up to me.”

Although high school has been by far his best education experience, Luke said he’s treated differently there as well. For one thing, he has an adult chaperone looking after him at school, and there’s also the stigma for teens who don’t want to be seen socializing with someone different.

“I used to get really mad about that,” he said. “Now, I realize some people are just like that. I know it’s just them, not me. It’s something they have to figure out on their own. Also, in high school, you have the thing where people don’t want their friends to think different of them if they’re seen talking to me or something.”

For Misty, watching her son deal with the social isolation and physical struggles of DMD is difficult.

“I am proud of him beyond measure,” she said. “To see the kind of person he has turned into and is developing into, I am so in awe of him.”

She likens her family’s situation with a story she once heard about a butterfly. A gardener came across a cocoon one day and noticed it was moving. As he watched, the butterfly inside the cocoon struggled to free itself. The gardener decided to help the butterfly by tearing the cocoon a little. After the butterfly emerged, it tried to spread its wings, but fell over and died. It seems that without the struggle to free itself, the butterfly wasn’t strong enough to survive.

“Watching Luke struggle, this disease is like a cocoon,” she said. “He struggles to get out of it.”

Although he may be the odd man out at times at school, at home he’s the ideal big brother, Misty said. She has remarried and has a daughter, and Luke’s father, Pat Delia of Big Lake, also is married with children. All the younger siblings look up to Luke, she said.

“He’s a great big brother,” she said. “They worship the ground he rolls his wheelchair on.”

‘In Your Face’

When Luke finishes high school, one of his graduation presents is a book Misty wrote about him and his battle with DMD.

Called “In Your Face Duchenne Muscular Dystrophy: All Pain, All Glory,” the book is a rebellious and inspiring message that mirrors Luke’s attitude. For as long as he can remember, Luke said he’s been defiantly telling his muscular dystrophy “in your face.”

He had no idea his mother was writing the book and was surprised to learn of it on Friday, the day before he attended Colony High School’s prom.

“I don’t think people should be sorry for me,” he said. “I think we’re all put here for a reason. I look at (the book’s title) as telling people who don’t understand that here it is, this is what it’s like.”

Misty said she chose the title “because it’s constant pain all the time, and having to fight with teachers and the school district and the bus and watching it take over his body and always waiting for the other shoe to drop. You’re always in constant pain. But the glory is he’s still living, his sense of humor, his orneriness, his personality — everything about his life is so full of glory.”

When Luke thinks about others complaining about their petty problems, he laughs.

“I always just want to tell them to quit whining,” he said. “I have more problems than you, you don’t even know.”

Although he’s determined not to let DMD get the better of him, Luke still has some very real fears, the biggest one now being another potentially life-changing event. As his form of muscular dystrophy progresses, most patients will need to have a tracheotomy performed, a procedure that cuts a hole in the throat to facilitate breathing.

“The trach is probably what scares me the most,” he said, “because you have to have someone by your side at all times. It’s not the end of the world if that happens, but it’s something I do not want to have happen. I already have someone by my side (at school) Monday through Friday. That’s more than enough.”

Misty wants to share Luke’s story not to evoke pity, but to raise awareness of DMD and how it can affect people in every community.

“Don’t give money (for his upcoming treatment) because you feel sorry for Luke,” she said. “Give because you see the brilliance in him and you want to help him achieve his goals.”

Like many parents in attendance at Colony’s graduation, Misty already knows she will “be an emotional mess,” and Luke will be one more smiling graduate.

“I’ve definitely been through some hell and back,” he said. “I’m going to just want to shout and scream. I’ll be so excited.”

Contact Greg Johnson at greg.johnson@frontiersman.com or 352-2269.