Before beginning this project, I had never heard of Spinal Muscular Atrophy-1. I'd heard of Muscular Atrophy, but SMA-1 is arguably worse. It strikes infants, robbing them of their childhoods and eventually their lives.
Now, though, there is a newfound hope for parents of SMA children. Spinraza, a therapy that uses spinal injections, is set to hit the market in months. Children in clinical trials have shown remarkable progress.
The Butler family doesn't have much— with two SMA-positive sons and two daughters without the disease, they care for their children around the clock, sacrificing comforts and luxuries I take for granted, like going to the store easily.
But they have so much hope. Melanie, the mother, advocates tirelessly trying to get her sons into clinical trials to no avail. But she is thankful for her sons being alive. For the health they do have.
I also talked to the mother of a boy who is in the Spinraza trials, who has began to walk when doctors estimated he would live only months.
These families showed so much strength and so much gratitude. I hope, from the bottom of my heart, that Spinraza is available to all children with this disease. And soon.