When Micah Biello was diagnosed with spinal muscular atrophy type 1, no one in his family knew about the disease. Now four years later, Micah’s parents, grandparents, and other family members lead a Cure SMA Walk-n-Roll team named Micah’s Milers. The family has rallied around Micah. Not only do they fundraise, but they also help spread awareness. Micah’s family tells people everywhere they go about SMA.
His mother, Rebecca Smith, thinks back on their SMA journey and remembers how they felt when Micah was diagnosed. “At the time, it felt very surreal. It is impossible to process the words you’re hearing when someone tells you your child has SMA and what that prognosis means, because it seems so impossible that a disease like this could even exist, much less strike your family.” However, she also feels very fortunate that Micah was diagnosed quickly and they were spared a long process of elimination on the road to an SMA diagnosis.
Soon, Micah received a Cure SMA care package with toys and other helpful items. This was Micah and Rebecca’s introduction to Cure SMA. Now, they are leaders in the SMA community and work with Cure SMA to make positive change in the lives of many. They have advocated on Capitol Hill alongside other families on issues such as newborn screening for SMA.
Micah receives treatment for SMA at Columbia University and Rebecca has witnessed the importance of early diagnosis and access to treatment. While they helped get SMA added to the federal Recommended Uniform Screening Panel (RUSP), their home state of Maryland has yet to adopt newborn screening for SMA. Rebecca understands the power of advocacy. “When we speak together in a unified voice, people listen.” Micah and his family are continuing to push at the state level so that newborn screening is adopted as soon as possible.
They know that they are not alone. There is an entire SMA community that wants to accomplish the same goals as they do. Rebecca was able to see this first-hand this year at the 2018 Cure SMA Annual Conference. She was impressed that there were so many other parents that she could talk to about SMA; it felt like they were all a close family. She hopes to bring Micah to a future conference. She knows he will love it.
Rebecca knows that Micah’s SMA journey will be full of adventure. Sometimes this meant carrying Micah and his equipment down 11 flights of stairs when the hotel fire alarm went off. Other times it might meant participating in a clinical trial for treatment. Regardless of where the adventure takes them, they know that their family, the SMA community, and Cure SMA are there with them.
Learn more about the advocacy efforts happening in your area. Visit Cure SMA’s advocacy page today.