High school sweethearts, Steven and Amy Hoskin, and their 19-month-old son, Grayson, reside outside Sacramento, CA. Steven describes them as a goofy bunch, always playing practical jokes on each other. Grayson is quick to acclimate to his family’s cheerful demeanor and loves to join in on the silliness.
Grayson has been through a lot for a kid his age. Amy and Steven became worried after Grayson began to miss key motor milestones as a baby, and even started to see regression in milestones he had previously achieved. Grayson was hospitalized this past summer, where he was given genetic testing. Soon after, he was diagnosed with spinal muscular atrophy (SMA). Unfortunately, due to the COVID-19 pandemic, Amy and Steven weren’t allowed to both be there with Grayson during his hospital stays or emergency department visits, which led to a greater sense of stress around the diagnosis.
“We had voiced our concerns about Grayson not bearing weight on his legs a few times to his pediatrician. We were told to not be concerned and that he would grow out of it. When he did not, we pushed harder and at his 12 months visit we were finally referred to a neurologist.”
– Steven Hoskin, Grayson’s Dad
After Grayson’s diagnosis, Amy and Steven experienced that mix of heartbreak and relief that so many parents of children with SMA speak about once their concerns are finally justified. “It is important to take a deep breath and move forward with treatment when dealing with a diagnosis like SMA. Every minute matters,” said Steven. Reflecting on the past few months, he notes that “we are taking everything one day at a time. With doctor visits and physical therapy, Grayson is getting stronger day by day. We are relieved to finally have a diagnosis, even one as serious as SMA.”
More importantly, Grayson is not letting a global pandemic stop him from enjoying his first year of life. “He loves visiting the park, going for walks in his tricycle and Cure SMA wagon. Grayson loves to color and sing. He also enjoys bath time and swimming in the pool,” shared Steven.
The Hoskin family is grateful to be a part of the SMA community. “It means everything to us to have a family like the SMA community. Other families are always trying to extend their hand or give advice. It is an amazing thing. We love our SMA family.”