The Journey Begins
I am the parent of a wonderful son who lives with SMA. What I’ve learned is that when you have a loved one diagnosed with a disease, it affects the entire family. I remember that when the doctor used the words “Your son has muscular dystrophy". My brain and heart just froze.
My son was diagnosed with muscular dystrophy
It was August of 1982. Mike was just five years old when he was first diagnosed. His brother Daniel was three. I just gave birth to our third child, Allison. What a time of excitement over our growing family and complete devastation for Mike’s future.
Our knowledge at that time was that boys with muscular dystrophy didn’t grow into adulthood. What we didn’t understand was that the term muscular dystrophy was a broad heading for over 40 different forms of neuromuscular diseases. At that time there weren’t any treatments for any of these diseases.
The first question my husband asked the doctor was “Will this disease cut his life short?” and we were assured “no”. So our reaction was that we will handle whatever his challenges would be.
A later diagnosis of SMA
As we learned about muscular dystrophy, we found out that these 40 different diseases all had different outcomes. Over the years, we were given different possible names for his condition.
It wasn’t until Mike was 12 that he tested positive for SMA. We began to receive a lot of information on this disease. Unfortunately, what we were told at that time was that there were no treatments available. These were worrisome years while waiting and praying for more positive news.
Watching the progression of SMA
You watch and see the slow progression of this disease year after year. We experienced frustrating emotions as there were no treatments for our child. We continued to encourage him to stay positive and engage in healthy choices to keep moving in a safe way.
There were some setbacks over the years, which Mike persevered with his inner strength. Even as a first-grader who underwent surgery for heel cords and walked with casts on both legs, he handled it with a smile on his face.
It was necessary for him to go through physical therapy to maintain his ability to walk. In fact, he wanted to be on the T-Ball team and the swim team.
These activities gave Mike the confidence that he was just like his peers. No, he didn’t excel, but he always finished the game.
When he was 12 years old there was another leg surgery. This one was a little more complicated with pins inserted into his feet and casts on both of his legs. Despite the pain and some setbacks with this surgery, he handled it all with such dignity and that beautiful smile.
Sharing pain and hope with others
Just know that whether you are the person with SMA, the parent, sibling, or family member we share the pain and the hope for better treatments in the future.
December 2016 was the news we had been praying for since 1982. A treatment was approved for SMA. The excitement was palpable. The possibilities are a Godsend. How far will it take Mike? We live in hope.
Is self advocacy a part of your daily life?