In September of 2020, Darlisha and Jarrett Barnes got an urgent voicemail about their newborn, Harley. Harley had tested positive for spinal muscular atrophy (SMA) – a rare genetic disease that, when left in its most severe form, leads to progressive muscle weakness, paralysis, and permanent ventilation or death…
Amy and Adan Medina have three kids, each diagnosed with spinal muscular atrophy (SMA), a rare genetic disorder. And the prognosis for the most severe types, when left untreated, is devastating—permanent ventilation or death by age two in 90% of cases. “When I first heard about SMA, all…
In 2014 and 2015 respectively, Natalie and Tina received life-altering news. Their infant sons had each been diagnosed with a rare genetic disorder. “I remember asking the doctor, ‘How much time do we have?’” said Tina. “I could tell she didn’t want to answer, but eventually, she gave it…
Even under perfect circumstances, flying with kids can be tough—especially for the first time. So, mom Samantha Lackey planned extensively and hoped for no surprises. She researched airline accommodations, including seating, bathrooms and wheelchair storage, and how to get through TSA with her daughter’s medication. Of course, there…
When Maisie was diagnosed with spinal muscular atrophy (SMA) at just over six months old, her mom felt a timer counting down. “At that point, I was convinced beyond a shadow of a doubt that I would be burying her before her second birthday,” said Ciji Green. SMA is caused…
