My name is Brandon, I have Spinal Muscular Atrophy, which is a form of Muscular Dystrophy.
I was diagnosed around the age of one. I had my first wheelchair around the age of two and got my first powered wheelchair at the age of three! My mom didn’t let the power chair in the house till I was a lil older cause she didn’t want holes in the walls, haha. So right there at a young age I always wanted to go outside because I knew I could drive my wheelchair and feel independent. There were a lot of kids around my age in the neighborhood so there was usually always somebody wanting to hang out or we’d be going up and down the streets just being kids. I was never really sheltered from anything which to this day I am so thankful for because I know so many people in my situation that could have had so much going for them if they just would’ve been given the chance. If there was something I wanted to do between my parents and my friends we would find a way to include me so there was never any feelings of being an outcast. I had to go get a spinal fusion around the age of 8 because the curvature in my spine was so bad that it was crushing my lung. I was out of commission for a few weeks while I recovered but never looked back from there. I went to the same elementary and middle school as all my friends I grew up with, but when it came time to go to high school, there was a slight problem… The school I was supposed to go to and that all my friends went to was not wheelchair accessible. That was the first time I ever worried about if I was going to fit in because I had been around most the same kids all my life. Freshman year was kind of a weird year for me, I got into some things that most teenagers get into and was being a typical teen. After almost failing 2 classes freshmen year I came into Sophomore year a new person and went back to my roots of being Mr. Social, I met a few of my best friends to this day that would do anything to help me out. Then about half way through the year I came across a girl I couldn’t resist talking to!
We clicked instantly and the rest is history… We have been together for 10 years now and have a beautiful daughter who is almost 2! We always wanted a kid but never pursued because I didn’t want to pass the MD down, but after some genetic counseling we realized our child would only be a carrier and not have the disease. So we tried and tried for almost 2 years and next thing we knew she was pregnant. I now have a beautiful daughter, who is definitely the fuel to my body & heart! I think of her every day and that keeps me motivated to stay strong and continue to fight the fight that I’ve been challenged with. Yes I’m getting weaker, and yes I need more help as time goes by, but nothing has stopped me from being happy and living my life to the fullest I can. When the time comes to worry about a feeding tube or a trek I will think about it then but for now I just live the only way I’ve ever known.. Until the day my heart stops I will push hard and be there to support my family any way I can.
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As an SMA parent, friend or family member, we always question the future. Brandon opened himself up to one of our support groups. A little something I like to call 20 questions. He said ask anything. Here are few exerpts from the conversation. While it confirmed alot of what we know to be true it also gave us hope. Hope that our kids will grown up.
When asked about progression of the disease he responded with
Oh ya I've gotten a lot weaker... I use to be able to climb down from my wheelchair when I was in 1st grade, and things just slowly have gone away... I've learned to manage around my disability to help me keep my independence... I actually moved out the day I turned 18.. My mom hated me for it for a while but once she got past the part of her baby moving away and realized that I was living my life to it's fullest she is happy & proud. I am slowing getting to the point where I could use a feeding tube or a Trech is also a very possibly thing I'll have to get if I get severely sick again. I am a don't fix whats not broken type of guy so I am going to wait till its a necessity. I can move my arms fairly well but I cannot actually lift them up off my arm rests. Childhood was honestly no different for me than it was for anyone else, besides the fact I relied on my parents getting me in and out of bed.. I was always rolling around the neighborhood with my friends or having sleepovers etc. I was very accepted in school, it's all about how you present yourself... There were still a handful of bully's but my friends made sure that didn't last long lol. When asked abouts his wife-- met my wife in high school, she was a gymnast and took 8th place in the region of like 7 states. So it worked really well to have someone that was built strong so she pack me around... Her family was all so accepting of me, it was awesome. High school was fun, I didn't do any college but I still might go in the future. Best thing is to let Autumn be as free as possible because happiness leads to healthiness in my eyes.... If she is happy and has something to fight for it changes everything. Ever since I had my daughter I don't even feel like it's a possibility for me to leave this world, although I know that's not how it works...
When asked about siblings, as his feelings toward not being able to walk, as well as getting around. Also touched on his daughter. Nope Never angry or animosity towards anybody... I really feel that there's a huge difference between being born into something rather than having an accident or something... When you're born into it, that's all you know. I do have a half sister that's 15 and she is not a carrier or anything, she has a different mom. Yea the bus system here is pretty good, and I always have my chair that can get me the rest of the way after I get off the bus. We also have a van that we use, I usually only take the bus when I'm doing things by myself. I wouldn't rush on doing everything for because I feel it's important to treat her as a normal child, because you don't want it to get into her head that she can get anything she wants.. That's just my personal opinion though. As far as my daughter goes, we only had her because we knew she wouldn't have the disease. We did genetic counselling beforehand. She is a carrier and we are going to have to be open with her so she knows the risks before getting sexually active. I like to think of it as a free but great form of birth control. lol. If my wife would have been a carrier than we decided we would adopt.
Favorite therapy: Ya water was pretty much the only thing I enjoyed that helped.
When asked about..err um.. Potty use ;) usually for the restroom I can help myself with my urinal, I just make sure it's in reach. And if I need to do other business lol I can call my dad who can usually be there quick or my wife has a hour lunch break she can come home and help. Sometimes. I just have to hold it but that's the price of independence I guess.
"Embrace The Suck"
To donate and help find a cure for Brandon, Audry, and the rest of the SMA kids. Please visit www.sophiascure.org/donate
