Charley is 9 and three quarters years old. When I was a kid looking forward to turning 10, all I could think about was “double digits” and how cool and mature it seemed to have two digits in my age. I felt the same way last year, when my older son Sam turned 10. To have my little boy hit that double digit number seemed like such an important and exciting leap. But as Charley’s birthday looms, it’s not numbers in my head but words — specifically the phrase “wheelchair from 10-12 years old.” I have repeated those words — and continue to repeat them — over and over and over when I tell my story, to teachers, to new acquaintances, at fundraisers. And now my world is colliding with those words. A phrase that became almost rote as I repeated it so many times is all of a sudden fresh and raw and frightening.
We have moved mountains over the past 5 years. If we continue at this pace, Charley and other boys with DMD will surely have not one but several treatment options to extend and improve their lives. Research we got involved in when it was still being worked on in cells and mice has now moved to the clinic. Prosensa’s exon skipping drug is in clinical trials in several European countries. Sildenafil is being tried in 30 DMD boys at Kennedy Krieger Institute in Baltimore. Acceleron and Biomarin are two other companies that have DMD drugs in clinical trials. Remember that when Charley was diagnosed in 2004, there was not one human clinical trial for a promising treatment. The progress is astounding.
I know Charley will have treatment options. But I also know that he is 9 and three quarters, and he has four months to go until he’s 10 and then we’re in that “wheelchair from 10-12 years old” phase. Not every boy with DMD loses ambulation between the ages of 10 and 12. Chronic steroid treatment has prolonged ambulation for approximately two years, giving boys extra time on their feet. And some boys who don’t use steroids stay on their feet longer than average. Others end up using a wheelchair when they are 8 or 9. So I don’t know exactly how long Charley has to continue playing backyard soccer and “balloon ball” (a really dumb game in which he and his sister bop a balloon up in the air and then both of them try to get to it first, nearly colliding every time) and getting in and out of the car without help.
Nonetheless, I’m determined to stockpile some incredible experiences now. Starting today, I have officially declared this the Year of Doing Everything. From Summer 2010 through Summer 2011, Charley and I and the rest of our family are going to do all the things we keep saying we should do, but never get around to. I’m going to focus on Charley’s choices knowing that soon it may be hard or even impossible for him to do the things he’s always wanted to do. We’ll surely be hitting a lot of professional sporting events. Top on his list are a game at the new Yankee Stadium, watching the men’s finals at the US Open (he’ll probably have to settle for 3rd round given our budget!), and any professional basketball game but ideally the Lakers. He has his heart set on a concert featuring either Black Eyed Peas or Jay-Z. And a trip to China or Mexico are both top choices (guess where we’re going?!). This is an APB to all my friends and family and acquaintances — if you have freebies or amazing seats to any of the above that you got through work or through a friend or you can’t use them or you have extras, please think of Charley! A huge priority for me this year is to pack it with fun.
Charley is still bopping around in his usual exuberant manner. He’s tiny for his age (thanks to chronic steroid use) and his ‘fro is way-out (thanks to a stubborn refusal to trim his hair) and he’s been practicing his dance moves, so the overall image he projects is a very cool, compact dude on the move. I’m still betting that all the amazing stuff we do this year will be his firsts of many…and that as a teenager he’ll be climbing the rafters to his seats in Yankee Stadium and standing on two feet grooving at an Eminem concert. I hope we have a year packed with sporting events and concerts and an incredible vacation, and that it ends up being practice for a long life filled with these unforgettable experiences.