An Evening of Hope spreads awareness, advances treatment for Spinal Muscular Atrophy
Hayes Wingard is part of a new generation of individuals living with Spinal Muscular Atrophy (SMA). The 11-year-old Lexington resident was born before newborn screenings for SMA existed; now they are a standard practice in all 50 states. He was diagnosed before there was treatment available; now there are three options on the market.
Hayes’ family, which includes his parents, Kayla Cooper and Tyler Wingard, and brother, Judson, had never heard of the condition when he began losing some of his large motor skills (standing, crawling) as he approached his first birthday. When Hayes’ tiny hands began to shake and he became increasingly sedentary, the family sought medical advice.
“We got a lot of opinions, ranging from some experts saying that Hayes was just lazy to others suggesting that we were being overprotective,” said his grandmother, Kathy Cooper. “By the time he was 15 months old, we knew something was wrong, and we kept going back. At 20 months, he was diagnosed with SMA by a neurologist.”
With no known treatment and no predictable progression of symptoms, the unfamiliar neuromuscular disease was frightening for the family. They learned all they could and found their biggest source of support in a nationwide nonprofit organization that Kathy’s other daughter, Keri, came across: Cure SMA.
Founded in 1984 by volunteers dedicated to promoting research into the cause and cure of SMA, Cure SMA has 37 chapters, including Cure SMA Carolinas, across the United States. During its 40-year history, Cure SMA has funded more than $82 million in SMA research and is devoted to supporting individuals with SMA and their families.
Cure SMA helps families and other supporters understand the condition, which can be present in an infant if both parents are carriers of a mutation in the survival motor neuron gene 1 (SMN1). The typical role of the SMN1 gene is to produce a protein that enables nerves to control muscles. Lower levels of this protein impact muscle-dependent activities, such as eating, breathing, crawling, and walking, but do not affect intelligence or other cognitive functions.
About one in every 50 Americans is a genetic carrier of the SMN1 mutation, and approximately one in every 15,000 U.S. births are diagnosed with SMA as Type 1 (most severe), Type 2 (intermediate), or Type 3 (mild). Historically, babies born with Type 1 SMA died before the age of two, with those born with Type 2 or 3 living longer but with uncertain life expectancies.
Hayes’ family was relieved and hopeful when Hayes, diagnosed with Type 2 SMA, was cleared to receive the first approved treatment for the condition, Spinraza. It was Cure SMA – always at the forefront of research and advocacy efforts – who told them to hang in there when he was diagnosed, that this life-changing treatment was in the works.
Hayes received his first dose via a spinal injection in March of 2018. After an initial loading phase, he continued to receive his “Superman medicine” every four months. In the meantime, two additional treatments have been approved by the FDA. Evrysdi is a daily tablet or liquid available to people of all ages. The second treatment, Zolgensma, is a form of gene replacement for children under two.
With more clinical trials taking place than ever before, researchers are working to figure out how to best treat each individual who has SMA. This includes making gene replacement available to older patients, exploring new treatment options, and combining existing ones.
“Will Hayes ever have the opportunity to walk? It’s all unknown territory at this point,” Kathy said. “His current medication has helped slow the progression of his SMA, and right now we are focusing on supporting him as he grows into a teenager and then an adult.”
Hayes and his family face challenges beyond his treatment related to inclusion and accessibility, such as the presence of covered ramps to protect his high-tech wheelchair from bad weather, the steep cost of a handicap accessible van, and participating in activities most of us take for granted: swimming, parties, sports, fishing, riding a bike. Hayes works hard in his physical and occupational therapy sessions and faces each day with courage and optimism.
Through their lobbying and fundraising efforts, Cure SMA helps Hayes and families like his retain their hope for a better future – one with even more milestones than the ones they have already seen in the decade since Hayes was diagnosed.
Their signature event, Cure SMA Carolinas Evening of Hope featuring Hayes’ Heroes, is in its 10th year and will be held on Saturday, August 16, at The Country Club of Lexington. Beginning at 7:00 p.m., the evening kicks off with a cocktail hour, followed by a presentation on the future of SMA, a live auction, and then dancing and entertainment. Tickets can be purchased HERE, with proceeds supporting Cure SMA research and programs that benefit Hayes Wingard and others who have SMA.
Thanks to the advances made by Cure SMA and its supporters, Kathy has every reason to believe that her grandson will live a long, full life. As a rising seventh grader, he hardly has a career picked out, but she can imagine him in a service position with the police or fire department, as he has always been drawn to helping others.
“Hayes may continue to need some sort of assistance as he grows older, but there is great hope for his future and the future of the SMA community,” she said.