Introduction to MDA
After waiting months for the results of all those tests completed at St. Christopher’s Hospital, we went back to see the neurologist and were given a diagnosis of Friedreich's ataxia.
Overwhelmed and confused by a new diagnosis
Reading the material provided was extremely upsetting. This left us overwhelmed and confused.
It took a year for us to get ourselves settled with a new job, a new baby, and raising our two boys. Finally, we contacted the MDA and took Mike down to their clinic at the Children’s Hospital in Philadelphia.
These visits were an all-day affair. You see a nurse and fill out many papers, you talk with a social worker, Mike was examined by an orthopedic doctor and physical therapist, and finally, he was seen by the neurologist.
At this time, the first diagnosis was ruled out. It was explained that the doctors would follow Mike’s progress a while before a decision was made.
Meanwhile, they gave the name peripheral neuropathy.
We did feel we were at the right place because all they dealt with was neuromuscular diseases. We understood there were no treatments available and for years these visits were every six months.
With the orthopedic evaluation, it was suggested he have an operation on both heel cords because he was toe walking. For the next few years, Mike received physical therapy with the local Easterseals office.
Determined to keep up with the other kids
Life moved along with Mike playing the big brother and just enjoying being a boy. He wanted to play T-Ball with his friends.
Yes, he struggled to keep up, but his determination and smiles were inspiring. The following year we joined a neighborhood pool.
This was a good exercise for him and his siblings. He joined the swim team and was encouraged by his teammates.
Many times he was the last swimmer back but received the biggest applause. He finished every race and was always smiling.
I must admit that besides being so proud of his fighting spirit, a little bit of my heart broke every time I watched him struggle.
Staying strong for my son
When he was playing with his neighborhood friends and trying so hard to keep up, I would have to walk away and hide my tears. My husband had made me promise to not let Mike see me sad or cry.
He understood that this would be detrimental to his happiness. So whenever I was overwhelmed with sadness, I would go to my husband Dennis and cry all my sadness out.
Challenges and guilt as a parent
These were the years that I began to worry we weren’t giving our two other children as much attention they deserved. It’s the mother’s guilt...magnified when you have a child with special needs.
What I can tell any parent with these challenges is to be good to yourself. Guilt is of no use. Share some of the responsibilities and care whenever you can.
More knowledge and learning about SMA
Each year brought more knowledge about this disease. And most importantly, it gave us more understanding of our child’s strength and his need to have a happy life filled with joy and confidence.
After all, no one gives you instructions on raising a child, especially not a child with special needs. This is a lifetime of learning and praying.
Are you familiar with making food texture modifications for SMA?