The Promise of Treatment
Last updated: May 2023
Our family journey began when Mike was five years old. After a barrage of testing and doctor appointments, we were given the diagnosis of Muscular Dystrophy. The name of just what form of muscular dystrophy he carried was very speculative. Actually, he was twelve years old before the doctors agreed on the correct diagnosis of spinal muscular atrophy.
It took seven years before his form was given the name spinal muscular atrophy type 3. The reason it took that long was explained that each form of muscular dystrophy has a pattern it follows. Now we were told that there were no treatments available for any of the muscular dystrophies. The hope was that it would happen someday when the particular gene was discovered.
A treatment is approved!
In 2016 we heard the promising news that a medication named Spinraza was FDA-approved for treating spinal muscular atrophy. The excitement we felt for Mike finally getting treatment was palpable. Then in September 2017, he received his first shot. We were all over the moon with hope for his future.
Very effective for children with SMA
The reports on this promising drug were very exciting. Children receiving it were having great improvements of strength. The effects of this disease were being eliminated for some of these children. They were able to walk again!
Now that Mike had just reached his 40th birthday the effects of this disease had taken its toll on his physical health over all the years. But we always lived in hope that he would benefit from the treatments.
The treatment stabilized Mike's condition
What differed from the children on the treatments is that their bodies did respond much better. As a middle aged adult there were many years of weakness to his body. After five years of receiving the treatment his body has responded in a positive way by keeping his abilities stable.
As we learned from the beginning of his diagnosis this neurological disease is progressive. So the fact that since he is on treatment we can see that his physical condition has stabilized. This is truly a positive reality.
The dream of any parent is to give our child the best possible opportunity to have a healthy life filled with many years of happiness. What I can assure you is that our son’s life is filled with many years of happy experiences. Even though the treatments have not erased what SMA has done to his body, he has been a positive influence on all that he has met throughout the years, especially his family.
I would be remiss not to admit that we have experienced many moments of sadness that the promised treatments came later in life for him. We relish his emotional strength in living the best life. Trust that your child will give you, and all the people that he crosses paths with many lessons in acceptance and patience.
Each one of us has learned to survive and thrive in our life’s journey. It did take me a while to just accept and understand our son’s challenges, he has taught me well.
Have you found yourself facing accessibility challenges lately?
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