As we prepare for Ride4Gabe III — 2017 Race Across America — I am humbled by the remembrance of what today means to our family.
Today is always a tough day for us.
Nine years ago, Gabe was diagnosed with Duchenne muscular dystrophy. I remember getting that phone call, and knowing he had Duchenne the moment the doctor said hello. And I remember Traci falling to the ground, in the fetal position, screaming "NO ... NOT MY BABY!"
I looked her in the face and said I would do everything possible to ensure Gabe beat the odds.
Here we are, 9 years later, and I am not so certain anymore. But, please understand, I will never give up fighting, I have just realized what we are up against. I have managed through it as best I can. And today, like every day, for my family's sake I just try to keep some sort of normalcy. Most days that is easier said than done.
Today I was going through my computer backpack. Inside a zippered pouch, I found a speech that Addie wanted to read to the FDA at AdComm — one year ago — for Exondys 51.
— This still makes me cry. —
Gabe's twin sister was not thinking about being a little girl. She was writing speeches to a government entity. Sadly, as a 10-year-old, it's one that she knows too well.
I ask myself, at that age what child should know as much about the FDA? And I am so proud of her when she unselfishly speaks of ALL the boys. That is just incredible. As we all know, she is a fighter. She will do anything she can to help her brother.
Still, it is sad to me that a 12-year-old little girl "gets it," likely more so than many government agencies. She believes, like we all do, that access to medicines is critically important to families fighting rare diseases.
I love you Gabe, you are my hero. And you have the best twin sister anyone could ever have.
Addie has your back. We all do!
If you want to make a difference, PLEASE donate now to Ride4Gabe III. We are taking our message of "Racing for Accelerated Access to Medicine" through 12 more states over 3,071 miles. Along with a crew of 16, 3 SUVs and 2 RVs, we'll advocate for awareness and local resources in each state.
You can text "GABE" to 91999 or go to www.hopeforgabe.org to donate through PayPal. In recognition of Addie and Gabe's 12th birthday, we've created a Sponsor-a-Mile Campaign. For only $12 a mile, your donation can make a big difference. Sponsor a mile, ten miles, or any number — every bit helps. Our ride organizer, Michael, has also set up a GoFundMe page: www.gofundme.com/ride4gabeIII.
Gabe, and all the others fighting Duchenne, thank you. We thank you, too.
Blessings, Scott — aka, Addie & Gabe's dad
10-year-old Addie Writes to the FDA
TO LEARN MORE, GO TO THE R4G FACEBOOK PAGE: www.facebook.com/ride4gabe