Go Forward... Step Back..Breath...REACH OUT!

July 24th will be 13years on this DMD journey with my son...I must say it has been one heck of a ride! Luke is now 17, going into his senior year which I never thought would happen...He just took his college aptitude test...he is going into AutoCad...He is smart, compassionate, caring, brillant with a great sense of humor and I can honestly say we are friends tackling this DMD thing together!

Here are Luke's chapters from his life journey:

Crawled at 8 months
Walked at 18 months
Diagnosed at 4
First bike at 5, (never learned to ride it)
First Wheelchair by 10
Full Spinal Fusion at 14
Heel Cord Lengthening at 15
Caregiver Abuse at 15 (horrifying!)
Mainstreamed in school junior year (almost straight A's)
First Prom at 17 with a date ;-)

Over the years I have always moved forward...but it wasn't until recently that I would reach out to my support people
when life was just to much to take...

If I could give any advice at all to the parent facing DMD it would be don't do it alone, people out there care, people here at PPMD care, I care...

LOVE TO ALL !!!

Misty (Luke's Mom)
http://www.MistyVanderWeele.com

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Comment by Jacqueline M McConnell on August 27, 2009 at 2:11am
Misty,

I wanted to respond to your last post but you know how beautiful the summer has been! We've been camping and splashing in the kiddie pool almost non-stop until school started last week. My sweet John is now a kindergartener; Alice Jeanne is in second grade. I am left with my baby, Danny, 4 years old at home (part-time once preschools starts.) I would love to attend a conference or Run for My Son (and daughter) but we spend all our miles trying to have family vacations in between our annual visits to Childrens' Hospital in Philly where my kids are enrolled in the United Dystrophinopathy Project. We are about to head 'back East' next week for our appointment with neuromuscular. Anyway I wanted to ask you about the RFOS races. Have you ever tried to get a RFOS team listed as an official charity in one of the Alaskan runs? I sent an e-mail to the organizers of the Mayors Midnight Marathon to see how a group gets listed as an official charity but never heard anything back. I would love to have a race here. Running is so big in AK and people here are so generous. Even though it is far away from most of our DMD parents some of the diehards might be willing to come run with us just for the fun of being here during solstice. What do you think???

I'm sorry Luke missed out on his last year of camp. It sounds like he is moving on to some bigger projects.

Take care!

jackie
Comment by Veronica E. on July 16, 2009 at 10:53am
Thanks for reminding us to get support when we need it and sharing your story! :)

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