Our journey began long before my son, Hussein, was born. Due to a family history of SMA, my husband underwent genetic testing to be sure he was not a carrier. We received news that he was clear, and based on that reassurance, I was not tested. We believed the…
Guest Voices
My parents were the first to notice that I had some art talent. Spinal muscular atrophy (SMA) wasn’t well understood when I was a child, and in an era before iPads, cellphones, and travel games, they used to let me entertain myself by doodling on the paper sheets on…
I am honored to have the opportunity to share my journey as a mom to an extraordinary human being. My son, Brandon Johnson, has faced immeasurable odds and lives a life that reflects resiliency and strength of spirit. In my professional life, over the past 46 years, I have been…
Since we’re now well into cold and flu season, there’s one subject that will be at the forefront of my mind for several months: to do everything in my power to not get sick. I think everyone with spinal muscular atrophy (SMA) can relate to the unmitigated fear associated…
Our daughter, Charlie-Anne, was born on June 22, 2009. When the doctor handed her to me, I was shocked to see a full head of beautiful, red hair. I was instantly in love. I had been diagnosed with premenstrual dysphoric disorder years before my pregnancy, so regular mental…
Our journey was rough from the start. During a well child visit, I shared concerns that something was going on with my son, Luke (call it mom instincts). We were referred to a neurologist and then a brain and spine specialist where Luke had three blood tests done, one…
For much of the time, the reality for those of us living with a chronic condition like SMA entails having something dangled in front of our faces, just out of reach — which isn’t challenging to do, considering our severe mobility limitations. Whether it’s treatments that seem to be…
Robin Collins is a self-described “little old lady.” She’s 4 feet tall in her wheelchair and unexpectedly hurtling toward age 70 while wearing functional, ladylike skirts. Robin has SMA type 3, which was diagnosed before she turned 10. Lately, she’s more vocal, writing down her thoughts and sharing…
Joanna Buoniconti is a writer and editor based in western Massachusetts. She was diagnosed with SMA type 2 in 2000 at 10 months old. Aside from writing, she has a book editing business and contributes a monthly column about disability advocacy to a local newspaper. In her free time,…
Jeffrey Selby is a proud husband to his wife, Angie, whom he married in 2017. Together, they’ve built a life full of love and laughter. Jeff, a licensed real estate agent, has spinal muscular atrophy (SMA) type 3. He spends his time supporting others with the disease.
