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…
Aspen is a spunky four-year-old in Peachtree City, Georgia. She loves doing art projects, playing with Barbies, and riding around the block with her big sister Aniston at the wheel of their go-kart. She’s also living with Type 1 SMA. Each year, 11 babies in Georgia are born with SMA,…
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…
We’ve all had a bad night of sleep – anxious thoughts, uncomfortable sleeping position, needing to get up in the middle of the night – followed by a day of fogginess and irritability. But if one bad night turns into a pattern of poor sleep, it can affect you in…
Any parent who has received a spinal muscular atrophy (SMA) diagnosis for their child can tell you that early treatment is crucial. Children who receive treatment for SMA as soon as possible are more likely to achieve important motor milestones. One-time gene therapy ZOLGENSMA® (onasemnogene abeparvovec-xioi) can stop the…