Super Asher

          Meet Asher Wilcox, aka Super Asher (Find him on Facebook – Super Asher vs SMA), a 5 month old hero who was diagnosed with Spinal Muscular Atrophy (SMA) at exactly 1 month old. Super Asher has two trusty sidekicks, Caedmon (6) and Dominic (2), two super parents, Kory and Elizabeth, a super care team in Springfield, MO and at St. Louis Children’s Hospital, and a whole bunch of super fans! SMA is a genetic neuromuscular disorder that causes progressive muscle weakness, including trouble swallowing, coughing, and breathing. Super Asher is considered a “weak Type 1,” meaning that without treatment or therapy, Asher wouldn’t be likely to ever sit without support, if ever, let alone stand or walk. Early in Asher’s journey, his primary neurologist said that Asher was one of the weakest she’d ever seen. But after seeing his super powers manifest over the past few months, she recently quipped that “he’s breaking all of the rules.”
          Super Asher’s parents believe that’s because Asher derives his super powers from the amazing people along his path. “He’s supposed to be here… you can see it when you look into his eyes… we saw it from day one,” they say. While the diagnosis was shocking, Asher’s parents now find it more shocking that he was able to be diagnosed so quickly. “It was all because of the relentless concern shown by his care team – starting with the midwives that delivered him, who noticed how his weakness was progressing, followed by his pediatrician, who cared enough to not let it go and had him admitted for immediate evaluation instead of waiting months to see a specialist, followed by his first neurologist, who saw him inpatient and started working behind the scenes to get treatment before the diagnosis was even confirmed… this isn’t the story that we’ve heard from other SMA parents.”
          See, less than a decade ago, treatment for a disease like SMA was just a dream. A majority of SMA Type 1 children diagnosed at Super Asher’s age were expected to die before age 2. Today, treatments are available that can virtually halt the progression of SMA, and because his care team wouldn’t let up, he had his first does of one of these treatments, called Spinraza, within 3 days of receiving a diagnosis. The first thing Asher gained was a grip. Now, his strength and and movement are jumping ahead of expectations.
          Connection is the key for Super Asher. One of Asher’s biggest fans is the first person his father called when he learned that the diagnosis was coming – a college buddy named Yahnatan, father of Max (FB Max Strength 4 SMA). Yahnatan played a pivotal role in getting Asher’s parents connected right into the heart of the “SMA community.” Since then, Asher’s parents have met countless families and read story after story of strength, hope, perseverance, and triumph. A common thread in these stories is the selflessness and tenacity of SMA parents and children – many now grown – who have walked their own path, all the while fighting for a better today and tomorrow for kids like Super Asher. With the dawn of treatments that can change outcomes so drastically, especially when started early, a more recent example of this community’s work is the fight for the addition of SMA to state newborn screenings on a nationwide basis. Yahnatan and his wife were instrumental in accomplishing this in their home state of Maryland. It starts in 2019 in Missouri.
          Asher and his parents will do whatever they can to follow in the footsteps of those who have gone before them, participating in research and advocacy and fund raising and sharing stories of hope and encouragement that will light the way for tomorrow’s SMA families. Right now, after a 100+ day hospital stay, Super Asher’s next big obstacle to overcome is busting through red tape and getting the help he needs from Medicaid so he can fly right out of the hospital and back to his lair… well… his home, where he belongs, to be together with his parents and his brothers again. So, bring on 2019, and let’s make it a SUPER year!
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