When people talk about Medicaid, it often sounds distant or technical. It is usually discussed in terms of coverage, rules, or eligibility. For me, Medicaid is much more personal. It shows up in my everyday life in quiet but important ways. It affects how safe I feel about my…
Guest Voices
Would you trade away your disability if you could? I know many people ponder this, although usually silently, so I thought I’d give you my thoughts for a penny. My short answer is no. Yes, I have days when my disability makes me feel like life is completely draining just…
This article was provided by our partner, the Muscular Dystrophy Association. It has been reviewed by Bionews for accuracy and relevance. The views and opinions expressed are those of the author and do not necessarily reflect the views of Bionews or SMA News Today. For people living with spinal…
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…
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…
