We had no reason to doubt that our third baby, Jeffrey, would be healthy. Our other children, Matthew and Katie, were in good health, and any known “premature” deaths in our families were attributed to miscarriage. And then SMA entered the picture. We said hello and…
Ella is growing up. She just turned 9 on June 10 and will be entering the fourth grade this fall. Her mind is as sharp as a tack. She’s starting to understand sarcasm and the ways it can be used. She is expanding her friendships to include a variety of…
SMA comes with a lot of challenges. The progression of the disease is the worst — at least, in my experience. About a year to 18 months ago, I finally had to accept the fact that I just couldn’t drive my electric chair anymore. Honestly, I probably shouldn’t have…
One of the ways that spinal muscular atrophy (SMA) has affected me physically is my posture. I’ve always had difficulty sitting up straight, and to this day I have lateral supports attached to both sides of my wheelchair to help with this. I…
Can you recall a day that shines brightly in your mind, as you were immersed in the beauty of nature and adventure all at once? Is there a time when your lungs inflated with a deep breath of peaceful fulfillment after the day unfolded, and even though the panoramic landscape…
Before I knew what illness anxiety was, I made excuses for my ever-present fear of death by the common cold. “I was supposed to die at 9 years of age,” I tell people, watching their faces screw up with realization. “I shouldn’t be…
If you live with a visible disability or illness, then there’s a good chance you’ve experienced a stranger coming up to you and asking to pray for you. As someone who has lived for 21 years with spinal muscular atrophy (SMA) and uses a motorized wheelchair, I have had…
Out of context, telling people that I willingly drive for an hour to get a good cup of coffee sounds pretty ridiculous. After all, think of the countless coffee shops I must pass en route to my destination. (I live in New England. If there isn’t a Dunkin’ on every…
Our house is filled with music and song. Ella turned 9 on Monday. In light of her joining the Young Naperville Singers, we decided to get her a karaoke machine. She was delighted at the prospect of hearing her voice through the speakers. We downloaded an app to go…
When I was diagnosed with spinal muscular atrophy (SMA) at 11 months old, there was no cure or treatment. Vitamins, physical therapy, and respiratory exercises were used in the hope of slowing disease progression and maintaining physical abilities rather than improve health. Five…
