31 Days of SMA: When Two Siblings Have SMA

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by Kevin Schaefer |

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Day 23 of 31 Days of SMA⁣⠀ Topic: Siblings with SMA⁣⠀ ⁣⠀ This is Natalie’s story! ⁣⠀ In order for someone to have SMA, both parents must be carriers of the gene. If both parents are in fact carriers, there is a one in four chance that both parents will pass along the non-functioning gene. My brother and I are both in that 25%. ⁣⠀ ⁣⠀ After months of testing, my parents had just received my SMA diagnosis when my brother, JC was born. They were still trying to cope with that information while they wondered if he was going to have the same fate. His legs seemed to start off stronger than mine, but it wasn't long before he couldn't stand up anymore. It was then that they knew he had it too. ⁣⠀ ⁣⠀ My parents still made sure we grew up with a normal childhood. They didn't focus on what we couldn't do, we just participated in things we could. We went to school with everyone else, had many friends, played outside, joined Girl Scouts / Boy Scouts, had sleepovers, had chores, got in trouble when we didn't do them, etc. I knew that my brother and I were different from the other kids, but our family adapted to our differences.⁣⠀ ⁣⠀ From a parents perspective, I imagine there are probably many more challenges that come with having two kids with SMA, but from my point of view, it's hard to imagine what it'd be like to have a sibling without SMA. Though I didn't directly think it, it was nice to know that my brother was going through the same challenges I was. It was comforting to know that when I had a hard day or was upset about not being able to do something, I could come home and be in a safe place where I wasn't surrounded by subliminal able-body comparisons. I admit that I did sometimes wish I had an able-bodied sibling to assist with some shenanigans, but hey that's what friends are for. 😉⁣⠀ ⁣⠀ Now, I do have to say that I sometimes envied that JC was second-born because he knew what to do / what not to do by the time I was done figuring out new things like going to college or getting a job. Now that we are adults though we are on an even playing ground. He has exceeded me in some 'firsts' – a testament to my parents raising us to be independent, productive people.

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