Yesterday was a terrible day, and it smacked me right in the face when I wasn’t expecting it.  I was a school nurse on a trip, and on the bus ride home I decided to check social media.  There it was, staring back at me: a friend reported they were doing CPR on his son.  I thought I was going to pass out.  It couldn’t be true!  These friends of mine I had met last summer training for the Marine Corps Marathon with the MDA’s Team Momentum.  Chris and his father ran for his son, Sam, who has Duchenne Muscular Dystrophy.  They are an incredible family, and Sam is a wonderful little boy.  I couldn’t believe this was happening to them.

I spent the day following the updates and asking for prayers – what else can I do?  This awful disease is threatening to take yet another child’s life and I simply cannot stand by and let this go.  Thankfully, Sam had some great teachers and medics who acted fast, but he’s not out of the woods.  He’s fighting for his life and needs all the support he can get.  I ask you to forgive me but there is simply nothing else to say – fuck muscular dystrophy.  I said it.  There is nothing else I can say that can convey how angry I am that there is nothing for these poor kids, no treatments, no cures, nothing.  How is this possible??  How can I not be on FIRE with RAGE that my son, and many other children like him (as well as adults) are suffering with no end in sight?  How can I spend every waking moment of every day trying to help my son get stronger, when it might all be for naught?  I simply won’t.   I will never.  I will get angry, and I will curse, and I will cry, and I will scream and whatever else is necessary to make changes, because this is NOT okay.

Events like this knock the wind out of me not only because I love this family, but because it hits a little too close to home.  Yes, we monitor Harry’s cardiac function, but it’s a frightening thing that anything can happen at any time.  I spent yesterday in a daze, crying and panicking, because it’s so awful and it could have been any of us.  Why should it be any of us, Sam included?

So please, keep Sam in your prayers today, he really needs it.  And send some good vibes out there for his loved ones too – this is incredibly hard for them.  If we stand together, we are a force to be reckoned with.  I’ve put together a facebook event to lend some virtual support.  If you can, please run three miles for Sam today and share your picture.  Running has been therapeutic for Chris and many of us, and it’s a small gesture that we are there to support.  Find the event here!

2 thoughts on “FMD

  1. Dearest Gloria, I am so sorry to know what this family is going through. I don’t run, but I do pray. And as I go to sleep each night, my prayers are often for my family. But last night I prayed for them instead, and will again tonight. Because they need it more.

    Love to you all,

    AJ xxx

    Sent from my iPad


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