Spinal muscular atrophy (SMA) may keep kids off their feet, but the condition doesn’t keep them from having the time of their lives in a skating rink to spread the word about SMA. After all, August is National SMA Awareness Month.
When you think about it, skating rinks (roller rinks and ice skating rinks) are sensational spots for wheelchair fun–sprawling, smooth surfaces made for speed–and a little sparkle! Five-year-old Garrison Murph of Hartsville, South Carolina and his four-year-old girlfriend Holly Tolson twirled around Hartsville Skating Rink in South Carolina along with other local children with SMA to bring attention to an inherited, debilitating disease.
Spinal Muscular Atrophy is a genetic neuromuscular disease that destroys nerves and muscle cells in the spinal cord and brain stem, producing weakness in muscles used in swallowing, breathing and the use of limbs.
The SMA Foundation calls it “one of the most common rare diseases” and “the leading genetic cause of death in infants and toddlers.”
Owner of the rink, Deborah Henderson, cheerfully allowed the children to use their power chairs on the rink, which was outfitted with a special ramp so they could easily maneuver onto the rink.
Once on the rink, the kids in their wheelchairs cruised around the rink’s expanse to the delight of everyone, including their family and friends–some who pushed and spun the chairs for the kids who couldn’t, and others who donned a pair of skates and glided alongside the guests of honor. Too young for a chair, one toddler was pushed in a stroller by his mom.
While feeding pumps and tubes, suction machines, ventilators, oxygen tanks, neck supports, and other devices are integral parts of everyday life for these children, Garrison’s mother Angela Murph says, “They have a good quality of life.”
Though he used to be verbal, Garrison no longer speaks or coughs, and he requires continual monitoring, but Murph is quick to acknowledge that the condition doesn’t stop her son from learning and having fun.
Garrison is both homeschooled and mainstreamed into the classroom at an early-childhood center. His new Tobi communication device lets him play the games he loves, and his mom says he’s a bright and happy child.
When Garrison was born, the doctors gave his parents little hope, saying he wouldn’t live for more than a year–a diagnosis they would not accept. They researched SMA, sought support and help from other families with children who have SMA, and Garrison’s day-to-day success is evidence of their endeavors and a reason to have hope for his future.
The Murphs, the Tolsons, and other families have bonded because of their focus, and they support each other.
“With us coming together, there is hope,” Tolson says.
The one thing these families would like you to know about SMA and their children is that there is hope, and their children are just like other kids–they just need a little more attention and caring.
And they’ll always enjoy a day at a skating rink–see how a wheelchair can do much more on a rink than you might have imagined! Are you ready to try wheelchair skating?