Mometrix Test Preparation - August 2019

Memo

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AUGUST 2019

I CANDOANYTHING This has been one busy summer. Looking back to June, I can’t remember a busier month for our family. Between moving to a new house and dealing with a major surgery, it was, in a word, intense. The summer really kicked off when our son, Benjamin, went off to MDA Camp for a week. MDA Camp is held by the Muscular Dystrophy Association. I’ve talked about it in the past, and it’s something that means the world to Benjamin who has spinal muscular atrophy (SMA), a neuromuscular disorder. The disorder can progress slowly, taking away different motor functions over time. It was April of 2017 when Benjamin was approved for a drug that essentially halts the progression of the disorder. While Benjamin has limited mobility, the hope is that he’ll be able to retain his current level of mobility. But at MDA Camp, limited mobility means nothing. When I look back, I can’t believe I was skeptical of MDA Camp. My wife and I were definitely overprotective of Benjamin. To have him gone for a week? We couldn’t bear it. Kids as young as 6 can attend MDA Camp (which is completely paid for by the Association, so parents don’t have to worry about the cost). When Benjamin turned 6, we didn’t even think about signing him up. A couple of years later when Benjamin and I went to an MDA conference in Washington, D.C. At the conference, we attended a panel of seven people who live with MD. Each panelist had a unique story. One traveled the world, one was a successful lawyer, one a successful entrepreneur, and so on. During the panel, one audience member asked, “How is it you’re so independent? What was your key to finding that independence?” Six out of the seven panelists had the same answer: MDA Camp. The seventh panelist, a college student, said she never had the chance to go to MDA Camp. Her parents never let her go, and she regretted it. That hit me hard. I had never really gotten it before. I was really into the research side of things and thought everyone should be supporting research initiatives. And while I’m still a big believer in the research, I’ve come to realize just how important camp was — not just for Benjamin, but for any kid who’s living with MD. That year, we signed up Benjamin for camp. We were super nervous about the whole thing; would he be okay for a week? When it came time to go to camp, we all packed up as a family to drop Benjamin off. At drop-off, we

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made sure his counselor knew everything he would need to know to look after Benjamin. After that, we said our goodbyes, went home, and nervously waited. A week later, when we pulled up to pick up Benjamin, we wondered just how much he had missed us — we had certainly missed him. It had been a hard week for Mom and Dad. Benjamin came up to me and the first words out of his mouth were, “Can I come back next year?” And he couldn’t stop talking about how awesome it was. Every child at the camp has a counselor assigned to them 24/7 to take care of all their needs. On top of that, the camp has every activity you would expect at any sleep-away camp: Archery, canoeing, horseback riding, rock climbing, zip lining — you name it. But every activity is designed so that any kid can participate. There are no limits at MDA Camp — Benjamin could do anything. Outside of camp, the world can often feel limited for someone with MD. It’s like there are walls around every corner. MDA Camp shows kids that those walls don’t really exist. Sure, it can be challenging, but you can learn the skills to navigate life and not feel limited. It’s life-changing to learn that you can do anything. Over the past few years at camp, Benjamin has learned so much about being independent. And we, as parents, have too! We don’t need to be as overprotective as we were. This year, after camp, someone asked Benjamin if he would rather spend a week at Disney World or at MDA Camp. We’ve been to Disney World a couple of times and had a blast. Benjamin’s answer was easy: MDA Camp. That’s incredible.

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