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Back to school with a wheelchair, service dog and rare disorder

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Let’s celebrate – we made it through the first month of my son Jack’s sophomore year!

Its 5:45 a.m. on Saturday morning.  I’m cursing that my body clock has already reset and my mind is running the to-do list through.  That list includes buying school supplies, paying school fees, planning school lunches, etc.   When my first born son was in high school I would have judged those parents who couldn’t get this done before school started. 

jackBut let’s back up. My son Jack was born with this rare muscle disease called Duchenne muscular dystrophy (DMD) and it’s my job to stay on top of all of his medications and appointments. DMD is a progressive genetic disease causes muscle weakness and eventually robs patients of their ability to care for themselves. There is no cure and no approved therapies to treat DMD but we did manage to get Jack into a clinical trial program for his specific mutation.

In the last week before school starts little man has a half day at a muscle clinic, a Translarna clinical trial appointment and we all get to spend Saturday at a conference to keep up to date on all things DMD to learn about potential drug approval with the FDA. Our darling service dog Amber also needs a general checkup, eye specialist checkup and grooming before school starts.  We have a week to do all this to prepare for high school. We’ve got this disability world down after a decade of practice.

Wednesday, while at the drug trial appointment, Amber yelped while shaking hands, so her checkup turned into a minor procedure to remove a broken nail up inside her dewclaw.   A minor procedure means we all cut back our activity for her to recover, because she goes everywhere with little man.  It also means no grooming.  Yes, I did send a shaggy dog, covered in a couple camping trips, back to school and she had her yearbook picture taken that way.   I know I’m the only one who will notice, but it still bothers me.

Little man couldn’t be left out of the fun.  Sunday after the first day, but before the first full week (yes, the district scheduled it this way), was set aside for relaxing and getting organized and resting up for the week.   We decided to take a walk, sit on a restaurant patio in the sun, enjoy lunch and relax as a family. While walking, in typical 15-year-old boy style, Jack was playing on his phone and ran his wheelchair into a bench.  Relaxing became an urgent care visit! Jack’s distracted driving accident resulted in a fracture in his right heal & ankle and smashing pain in his left ankle.  The first week of school instantly became a whirlwind of getting a broken child situated at school.   We had new medication forms, pillows to elevate legs, ice packs, educating the staff of potentially fatal side effects of minor broken bones in DMD and becoming masters of pain management.   Our attempt to get doctor’s appointments done before school started was destroyed by the addition of a new specialist to our lives, the orthopedist.

I’ve come to know that all parents have their own special challenges and in the end we all get it done, as best we can at the time.

Angela Knight is a mother of two boys, one of who has a rare form of muscular dystrophy called Duchenne muscular dystrophy (DMD). On behalf of her son she founded a community based event to raise money and awareness for DMD called Jumping Jack. More information about the Jumping Jack events can be found here: https://www.facebook.com/JumpingJacktoEndDuchenne/.

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Comments
  • comment avatar Amanda September 12, 2016

    I love this on so many levels. What an inspiration Jack and your family is!

  • comment avatar Reba September 12, 2016

    Angela, you are awesome. I love that you have taken a difficult situation and are helping others.

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