Who is Hayes?
Hayes is a big brother, a grandson, a nephew, and so much more. He is now an exceptional 2nd grade student, attending school virtually, and going live to school once a week for physical, occupational, and speech therapy. He also does physical and occupational therapy outside of school once a week. He has grown so much, continues to grow, and has shown us no signs of regression in his overall strength and stability. He has been able to participate in activities for longer durations and has overall generally demonstrated less fatigue with activity. He is as ferocious as all little boys are and enjoys playing corn hole, indoor golf game, board games, and is a master Lego builder!
But Hayes’ physical abilities are debilitated by spinal muscular atrophy. When he was born, he was perfectly normal, but started regressing at one year old. A genetic blood test revealed positive for SMA Type II. When Hayes was diagnosed, in May 2015, there was no treatment available for any physician to offer and no cure. But there was hope because of Cure SMA. Because of the work Cure SMA does to fund research and find a cure, there are now three FDA approved treatments for SMA, Spinraza, Evrysdi and Zolgensma. Hayes has been on Spinraza since March 2018 and has shown no regression!
There’s great reason for hope, but Cure SMA's work is not done. Thanks to the dedication of its community, the generosity of its supporters, and the ingenuity of Cure SMA's research partners, they have reached a new phase in their mission to develop a treatment and cure for SMA. Now, more than ever, we stand ready to shape a future that will change lives and give new hope to all those who are affected by SMA, and we can’t do it without you. Please support us today by joining us at our virtual event or making a donation to Cure SMA.
