Community Members Share Their Everyday Milestones

Not every milestone is big. Some are small moments that feel significant because they mark a step forward. Here, community members share some of the everyday milestones they’ve celebrated in the past year.

Grayson

Grayson was diagnosed with spinal muscular atrophy (SMA) through newborn screening and began treatment as an infant. Now, at 2, he is exhibiting typical toddler antics. “Part of me wants to scoop him up and celebrate because climbing a chair is something I once wasn’t sure I’d see,” says his mom, Alyssa Woods, of Conroe, Texas. “At the same time, I have to say, ‘That’s not safe.’ It’s a mix of pride and protectiveness all rolled into one.”

Diana

José

Siblings José and Diana Colón Vega, of Puerto Rico, who live with limb-girdle muscular dystrophy (LGMD), learned to drive their adapted van. “It has not only given me the freedom to travel independently but has also fostered a sense of personal growth,” José says. “My journey has taught me that with perseverance and the right support, even the most daunting challenges can be overcome,” Diana adds.

Alexa

Alexa Dectis, of Los Angeles, couldn’t squeeze a tube of lip balm as her SMA progressed. “About a month into starting Spinraza, I mindlessly picked up an open tube of Carmex, squeezed, and applied. Suddenly, I realized that my muscles had gotten stronger,” she says. She posted about the experience on Instagram, and the maker of Carmex saw it and sent her a supply of their products.

David

“I love to be outdoors,” says David Daw, who lives with myofibrillar myopathy. In the fall, he and his wife spent a day at Angry Orchard in Walden, New York, with an accessible outdoor recreation group. “The orchard is absolutely beautiful, and the sunset was beyond amazing,” he says. “It was a very special moment in time.”