There’s an extended SMA community—friends, family, physicians, advocacy representatives, researchers and scientists—that’s constantly working to understand the daily challenges experienced by adults living with spinal muscular atrophy (SMA). Over the course of their illness, adults living with SMA may need to depend on others to help perform activities of daily living, such as getting out of bed, getting dressed, brushing their teeth, and eating meals. Many have come to embrace that dependency and have expressed that every small improvement in their motor skills makes a world of difference in their everyday lives, both in helping to maintain some of their independence and expressing themselves.
For example, child neurologist Laurent Servais, M.D., shared how visual art has been the basis of an emotional bond for someone he’s worked with who has SMA. “She was able to create beautiful paintings, better than anyone I know, but she was losing this ability,” he explains. It was a terrible development because “art was her way of moving beyond her body and imagining another world.” A fine motor skill, such as the ability to hold a paintbrush, “is probably the minimal function you can capture with a [measurement] scale, but I can tell you that for this artist, it was extremely important,” he says.
Work by advocacy organizations plays an essential role in supporting people living with SMA by bringing them together both in person and virtually. “Adults with SMA tell us it would make all the difference in the world if mobility in their hands could just be stabilized,” says R. Rodney Howell, M.D., Chairman of the Board at the Muscular Dystrophy Association (MDA). Lucja Grajkowska, Ph.D., Medical Education Content Manager at the MDA, adds: “For many individuals, loss of the ability to groom themselves is the most devastating. The ability to lift their arms to brush their hair or feed themselves makes the biggest difference in their quality of life.”
It’s inspiring to see that adults with SMA have found ways to work with their loved ones to navigate obstacles with mobility and independence in their daily life. And these loved ones, including friends and family, reassure them that helping them with these daily physical tasks is a privilege, not a burden. Kenneth Hobby, president of Cure SMA, says adults living with SMA continue to face a great number of daily challenges. Nevertheless, he adds, “We frequently hear from our community that they feel able to overcome these challenges. They’re confident in their ability to do extraordinary things, live independently and contribute to family and society.”
As a company focused on advancing the understanding of SMA through our scientific research, we’re humbled to be part of this resilient community. Below are some of the stories of adults living with SMA living life on their terms, and we will be spotlighting many more in the months ahead.
Kevan was diagnosed with SMA at an age when most children are learning to walk. “I grew up with amazing parents, a brother who is able-bodied and a sister with SMA,” he says. “Those connections have shaped how I interact with the rest of the world.” At the same time, Kevan treasures certain memories of college precisely because they seem so ordinary. Once, his friends had a potluck dinner – Kevan showed up and immediately noticed stairs in the hallway. His friend turned to him and said, “We didn’t think about it because we don’t think of you differently, and we still want you here.” Before Kevan could come up with an answer, the friend carried him up the steps.
Today Kevan is 33, and some of the same college friends still carry him on mountain trails in countries around the world. The group raised funds to design a special backpack for this purpose in a project called “We Carry Kevan.” This is also the name of the nonprofit Kevan founded with a unique mission: to redefine accessibility as a group effort.
SHANE BURCAW & HANNAH AYLWARD
Over many years living with SMA, 26-year-old Shane Burcaw says he has relied on the wisdom of strangers. “Being able to see such a wide range of experiences, how different people handled things and what they’re doing as adults gave me the belief that I could do that as well,” he explains. Shane is now an author, blogger, YouTube star and public speaker who intends on changing public perceptions of people with disabilities, including their ability to have romantic relationships. Even with these achievements under his belt, Shane grapples with the feeling of being a burden to others. “Often there’s no reason to feel this way, other than lifelong feeling of needing help,” he says. His fiancée, Hannah, is not only his partner but also his caregiver, and that can be complicated, Shane concedes. “But Hannah has helped me overcome the feeling that I’m a burden,” he says.
For someone like Shane, a network that communicates encouraging news is a precious lifeline: “I think of the little 13-year-old me discovering my own prognosis online for the first time.” But today, the information channels in the SMA network deliver hope to younger members of the community. As Shane points out, “with the rise of adaptive technology and advancing medical treatments, individuals diagnosed with SMA are often able to attend school, find employment and start families of their own.”