Luke Delia, age 19
Poet & Duchenne Hero
He loves the great outdoors, Nascar, his family and LIFE!
Luke has Duchenne but Duchenne doesn’t have him.
Not that Duchenne hasn’t left its mark!
When Luke was 4 he was diagnosed with a life-altering 100% fatal form of Muscular Dystrophy -DUCHENNE. He would be very lucky to graduate high school. Shortly after diagnosis his Duchenne journey started becoming famous in an award-winning article, in the Alaska Parenting Magazine titled On a Wing And A Prayer. He served as the Muscular Dystrophy Association Alaska-Chapter Poster child for two years, at ages 7&8. Went on his Make-A-Wish trip when he was 9 to Disney World. Walked until he was 12. Luke had full spinal fusion at 14 (9-hour back surgery to straighten his spine.) And at 15 had heal cord lengthening and toe tendon release surgery. At 16 breathing function started to become an issue while sleeping and had to start using a bi-pap at night. Then “it” happened!
Eight Day Hospital Vacation
As you read above the beginning of Luke’s Senior year he ended up with the flu and pneumonia. He was told he wouldn’t leave the hospital without getting a tracheotomy. He asked what he had to do to not get one. Doc, said to get the junk out of his lungs. Luke showed us what he was made of. I then watched him work with the hospital respiratory team and cough every hour on the hour for an entire 24 hours! Was gut wrenching to watch, but at the same time incredible his will to live! I refer to this as his “Great Trach Escape”
What do they know!
Luke graduated with his graduating class of 2010! Luke’s hospital vacation and his student aide trouble had him falling behind but he did it!
Luke’s Graduation in the Frontiersman
He even managed to take his mom to prom!
Worst that could happen was nothing
A duchenne mom I know sent me a video of a boy with Duchenne who was still walking a bit at age 17 and a little boy with DMD running and jumping who were receiving STS/VECTTOR treatments, I was skeptical and decided to call the doctor. I was pretty sure that I would have to leave a message and that I would hear back from a nurse or something like that. You can imagine my surprise when the doctor called me back on a Sunday night I believe and talked to me over an hour on the phone. From that conversation I learned the worst that could happen was nothing. I also felt an urgent need for Luke’s life. His days were number. However after talking with Luke, he decided he should graduate high school first then go down for treatment. Read “You mean my brother could hug me back” for the rest of the story.
Check out Luke’s Poetry:
http://PoetryByLukedelia.blogspot.com
What has Luke been up to in 2011?
The 13+ months of VECTTOR treatments has helped Luke physically in gaining more strength, mentally with more confidence since he feels good and spiritually know that life if good. Luke says for the first time he feels like he has a future.
He has moved into his half-apartment at his dads, is running his entire care staff, appointments and has begun to work on his hand strength at OT so he can drive! It is very strange for me to be having more time to do what I want, but I am one proud mamma! He does Occupational Therapy and Physical Therapy 2x a week, and 3 hours a day of VECTTOR treatments except Saturday & Sunday when he only does an hour in a half night treatment. He is dedicated another year to his healing. Then he will think about college. He also works at his dads Alaska Mobility Van Rental and Sales business as a graphic designer/marketer. I pinch myself to see him doing so well!
