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…
Guest Voices
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.
