Duchenne Awareness Day

Duchenne Awareness Day

When Garrett was about 3 years old, I noticed some gross motor delays–climbing and jumping specifically. As a physical therapist, I was trained to notice these things. I made an appointment with his pediatrician who assured me that all was well. Fast forward several months. Garrett was struggling to climb steps and hills at the park, to which we attributed to a bit of laziness (sadly in hindsight). Then one day I watched him get up from the floor–just the same way as he always did. He had to use his hands to push himself up on his thighs and it suddenly hit me–that was a Gower’s maneuver! Something I’d learned in school several years before. A blood test followed soon with a phone call the next day to confirm: Your suspicions were right–your son has Duchenne muscular dystrophy.

We finally got an appointment with the neurologist recommended by MDA. To say he was impersonal would be the understatement of the year. I remember vividly the scene: he pulled out a black beat-up medical bag and reached inside for a pink rubber ball that he bounced around the room to watch my 3 year old son chase. No physical contact was made, no physical exam, no happy reassurances. No hope was given. Only a grim, “There’s nothing we can do–just take him home and love him.”

We had learned about Duchenne muscular dystrophy is PT school so I immediately knew what it meant. They say knowledge is power, but for me knowledge was debilitating. I thought knew the life expectancy, I thought knew the cardiac and respiratory problems, I thought knew the loss of mobility, I thought I knew the insurmountable cost associated with chronic disease. I thought I knew the isolation. As a physical therapist I thought I knew all there was to Duchenne, but there was so much I was unprepared for.

I don’t know how long I sat in the floor in a crumpled heap with the phone still in my hand after we got confirmation of the diagnosis and I don’t remember how long it took before I felt whole again. I can recall that I have decided to CHOOSE JOY every day, to appreciate the small things, to stop and breathe, and sometimes to cry alone in my shower. I recall all the advocacy and fundraising efforts that we’ve undertaken through the past 7 years, though often feel discouraged at their seeming lack of results. I’m reminded of the countless families we’ve met along our journey that trudge these trenches like us, all in hopes of a better outcome for their children. I recall the first nurse we encountered at Cincinatti Children’s Hospital saying on our first visit: “Your son is young– you have much hope!” Now he is 11. No viable treatment for his specific mutation of the disease, no cure on the horizon.

That is why we run. That is why we advocate. That is why we host events like Garrett’s Hero Run. That’s why I tear up your feed every day with his photos and projects you can get involved with. So today, on Duchenne Awareness Day, will you find some way to honor Garrett and our efforts to give him a better-than-expected outcome? You can register for Garrett’s Hero Run, sponsor us in our Walkathon, donate or buy something from our silent auction, or buy a t-shirt.

“No one can do everything, but every one can do something.”

Garrett’s Hero Run is October 14, 2017 at Maury County Park. 

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