For even more information about Duchenne, check out the following link to this short clip of a packed, educational, and relatable collection of interviews from a range of boys with the genetic disorder of Duchenne Muscular Dystrophy.

www.tinyurl.com/DMDaware
https://youtu.be/16cLkmOSHGY

A special thanks to Mrs. Jennifer Garofalo for writing this week’s post. The following is a collage of stories directly from a mom of a 14-year-old boy with Duchenne. These stories show the good and the bad, but most importantly the fact that DMD does not define who you are…

My son is not defined by DMD

The very first time you hold your baby in your arms, their entire future flashes before your eyes.  Who they will grow up to be, all they will accomplish, and how you are blessed to be their parent to help them navigate through life.

We knew pretty early on that something was different about Danny.  By 12 months he was immersed in the world of Dr’s and daily therapy sessions, whether it was Physical therapy, occupational therapy or after the age of two, speech therapy was added.  He couldn’t crawl or speak or even bend his body but man he had a smile that lite up the room (still does). He was diagnosed as a right hemi they called it. Cerebral palsy(CP)! Mild! It would get better with time and therapy and he would easily adapt to his surroundings.  Except that each month when they thought he would meet milestones, he never did.  And then the Fall after he turned three, he couldn’t walk more than two houses for trick or treating and wanted to be carried.  He also had what looked like absent seizures.  He would be talking to you and then just blankly stare and then start talking again a few seconds later. After months of testing, the Drs. wanted him to be admitted to the hospital for a 72-hour EEG to see what was going on.  It was during that hospital stay that we found out he wasn’t having seizures, but he did have Duchenne Muscular Dystrophy (DMD).  WOW!  I remember thinking how hard I thought his life was with CP, we had no idea what hard was. And just like the day he was born, I watched his future flash before my eyes and it was so drastically different and heart wrenching.

But here is the thing, in life, you will always be faced with adversity and paths to pick.  It is how we choose to handle these day to day paths that will define who we are and how we see life.  A very dear therapist who was involved since the beginning with Danny gave us the BEST advice that we still use today “Do not enable him. Things will get hard, be there for him but do not let him act a victim.” And I think anyone involved in our lives know that is exactly how we handle this disease. It is just that; a disease that is part of him, but it doesn’t define him.  Does it limit him? It can. Do you need to get creative and find work arounds?  Yes!  And hopefully that is what we have taught him, there is almost always a work around to any situation. 

More than anything though, he teaches us. He teaches us how to push through adversity.  Push through when you feel left out or different.  Push through when days are hard.  He brightens the day with his smile and his snarky teenage attitude.  Does he get in trouble? Heck yeah! At the end of the day, you need to be a respectable human being, no matter wheelchair or not, and he has two younger brothers who look up to him. 

His whole life has taught all of us to stop and focus on what’s most important. Each other and time.  Enjoy the gift of time.  None of us are guaranteed tomorrow.  #makeeverydaycount

-Jennifer Garofalo