“You can head to Enterprise right over there, and I’ll meet you at the doors so you can pick me up at the curb.” So when an 11 year-old navigates me through the airport and rental-car service better than any seasoned business traveler, I can take a deep breath and realize I don’t have to worry about getting this kid to his very critical weekly infusion appointment. He will get me there.
Yes, that’s right, Ben travels once a week via flights to and from MN to IA, and quarterly trips to CA to participate in a double-blind placebo-controlled study to evaluate the efficacy of a new medication to slow the progression of Duchenne Muscular Dystrophy. I’m not going to get into specifics of DMD, or the heart-breaking statistics and the obstacles kids like Ben face. Instead, I’m going to share the day in the life of Ben and my observations as his day-trip companion. I’m sharing the joy and optimism, and the daily battles this guy faces that make him a warrior. I’m hoping this blog and these images show the resilience and bravery he faces and overcomes daily.
Spend five minutes with Ben and you get a glimpse of his “old soul”. He’s fastidious about his things and where you place them. He has an amazing sense of direction and attention to detail. When we arrived at Iowa City Airport, he noticed the carpet was removed, and that the seats were placed differently, and any other variations that were different from what he was used to. For a boy who has no control over this degenerative disease, the treatment plan he’s under, or the outcome of said treatment, having as much control over the details of his day makes complete sense. From what he orders at Panera, to when I should call the hospital to order the gaming cart, (fail on my part for forgetting the latter part), his need for routine and predictability is a necessary coping mechanism.
Despite the early pick-up for his morning flight to IA, the delay at the gate waiting on a plane repair, the blood draw he wasn’t anticipating, or the countless other things he faced today; he kept his witty sense of humor, the easy banter he has with everyone around him, and a little wiggle in his hips when he gets excited about something. This is the epitome of resilience. I had the honor of accompanying Ben to IA for week 1 of his open trial, that followed 96 weeks of his double-blind study, in which his family didn’t know if he was receiving the medication or placebo. Today was the first day it was certain he was getting this critical medication. And yes, he’s in for another 95 weeks of participation in this study. He is one of three subjects participating at the University of IA Children’s Hospital, and one of 100 participating nationally. The commitment and hardship on these kids and their families is hard to fathom, but critical for this potentially life-saving medication to pass this efficacy study and be made available to all kids with this diagnosis.
When I asked Ben who he looked up to, he said his parents. He obviously gets his strength, determination and resilience from them. They have taken on this challenge to be a part of this arduous study, and have the love and support of many friends and family. Thank you, Ben and family, for trusting me to accompany him and for allowing me to chronicle a day in his life. The struggles, the laughter, and the accomplishments, both big and small. Your struggles and accomplishments will not only benefit you, but also pave the way for countless other families who need this medication, and more importantly, HOPE.
If you’ve considered accompanying Ben on one of his weeks, do it! And if you’re worried about how you’ll navigate him to and from for his infusion, I am not kidding, he will guide you every step of the way! Yes, it’s a long day, but you will be enlightened and enriched by this experience. He is witty, he is silly, he is smart, he is loving, and he is a boy who needs to be a boy. You will not regret a minute of it, and will walk away feeling grateful Ben spent his day with you. You can ask any one of the friends and family who make up Ben’s Bunch. Here is a small collage of those of us lucky enough to accompany him on this journey. I know I am missing many of you, and I’m sorry. I could only copy this many from Missy’s Facebook feed. Let’s fill another page and celebrate the second 96 weeks!