COLORADO SPRINGS – Can you imagine being told you were losing control of your body, and there was nothing you could do about it? Lose ability to talk, walk, run and be active, so many things many of us take for granted would all likely be lost at some point.
At any age, when muscular dystrophy strikes that is usually the reality. Everyday brave boys and girls, young men and women, and even adults face this reality courageously, and press on working to live life to the fullest.
This Saturday June 1st in Colorado Springs this group of people and their supporters and family will gather at John Venezia Park for the MDA (Muscular Dystrophy Association) Muscle Walk. People like thirty-seven year old Brian Moreno, his family and his many friends, and so many others like them.
While Brian’s story is his own, and not the typical muscular dystrophy story of the genetic disease striking in his youth, Brian tells me that when he was in his early twenties, he noticed something was wrong. He he didn’t think much of it, but the muscles in his legs were shrinking.
Brian says, “It took like ten years before I figured out what was going, and somebody started to really dig deeper. For a long time doctors thought it was (problems with) my back. I had back surgery, and when they wanted to do a second surgery on my back, something inside me told me it was something different. I saw a neurologist when I was about thirty-two years old and he told me, ‘You’re right, it’s not your back and we’re going to send you to see somebody else.’ They sent me up to Children’s Hospital Colorado, and they did some blood work. They told me that they thought it was muscular dystrophy – and that day changed my life.”
The news was sobering, shocking, and confusion all at the same time for Brian. “I didn’t know what to think. I didn’t even know what it was. I had heard of it, but I didn’t know exactly what it was that I had.”
It’s a diagnosis that has an impact beyond the person diagnosed. Brian says, “I was married with two young boys, I didn’t know if I was going to be able to be active in their lives, or would they see their dad in a wheelchair soon. It hit my mom hard when she found out. I have been an athlete my whole life. My mom thought she did something wrong, because it’s a recessive gene.”
Coming to grips was a process for Brian that took time. “It hit me pretty hard for the first year. I didn’t know what was going on or If I would still be walking today. To try and comprehend all of that is pretty hard – it’s pretty heavy. Then I started working with the MDA.”
Becoming involved in the MDA community raising money and awareness and trying to bring hope to others with muscular dystrophy helped Brian find a new focus. “A lot of the kids that I got to meet through MDA, they are my heroes.”
Five years after his diagnosis, Brian’s muscular dystrophy has progressed slowly. “I have been lucky enough that I’m still standing straight up, and I am coaching my boys baseball team and I’m active in their lives – and not only their lives but a lot of other kids lives.”
While he still gets around, Brian’s muscular dystrophy has taken its toll. “I’m thirty-seven and I’m still able to walk. I’m not able to run, but I can walk fast, but not fast enough to keep up with my boys if they are walking fast.”
Many people who meet Brian, don’t know that his daily life is not as easy physically as it used to be, including many in the MDA community. “A lot of the kids don’t know that I have muscular dystrophy. When I come to the walks I don’t tell them, ‘hey I have muscular dystrophy’, I just just say hi and walk with them and talk with them.”
There are many forms of muscle dystrophy, and it has a wide range of how it impacts quality of life at different stages, but Brian says the people he has met have one thing in common besides their diagnosis. “Kids that have muscular dystrophy and their families, they make quality of life what it is. Many of them are so positive. I hear muscular dystrophy families say all the time, ‘We just make it work, we’ll just make it work. We will get up at midnight every night and turn you over because you can’t breathe. We’ll get up and get you water’, and those kinds of things. These families are constantly trying to support their children – all year long. They don’t even think about having these diseases.”
One big focus of Brian’s fundraising has been to support MDA summer camps. “That makes me feel so good when we fund raise money and we get to have thirty-five or forty kids get to go to camp. They get the best medical treatment, and they get to play and just be kids with other kids that they have a lot in common with. They get to be free from everything, and be themselves. They don’t have anybody looking at them differently and they can make new friends. They look forward to that that week all year long. When you meet those kids and you hear about their stories from camp, it touches your heart.”
Another focus of fundraising for MDA is research in treatment. “The genetic testing and gene therapy stuff that’s starting to kick in a little bit. Those things were seven eight nine, ten years ago, when they first started and now they are coming to the forefront. There are more clinical trials and more therapy that are happening more now.”
Brian tells me there is more work to be done, and more kids to send to summer camp. It’s a big task, he tackles one day at a time which is also the way he and his family live their lives. “I never know what the future is going to bring. You forget about muscular dystrophy as the year goes on, you just live your life and you just make things work.”
Like any athlete, looking at a championship run it’s about surviving, and advancing. Life is still about what Brian can do for himself, his family and others – not what he can’t do because of his muscular dystrophy. “You just kind of adapt and you learn how to do things a different way. Right now, we’re talking about it and I think, ‘oh gosh am I going to be able to walk in five years?’ but a few minutes from now when I’m coaching these kids in baseball — I’m just going to be coach Brian — and they don’t look at me any differently, and hopefully nobody else does.”
I hope you will come out to the muscle walk this Saturday and meet Brian, and so many other amazing people like him, and his family. Anytime is a good time to make a donation to the MDA, and it doesn’t cost anything to come out and walk and take part in the event.
You can learn more about the 2019 Colorado Springs Muscle Walk ( HERE)