Babies born with severe cases of spinal muscular atrophy often don’t live to their second birthday. Doctors say a new FDA treatment is stopping the effects of the disease, and offering families hope.
At just a few months old, Chase Halstead’s parents noticed there was something different about their son. “The very first thing I noticed was at 10 months old he wasn’t didn’t get up off the floor the way every other child does. The other major thing we noticed, he would fall frequently. A lot of kids fall several times a day but he fell probably 10 times an hour just straight back on his head and at that point we thought something’s not right here and we started trying to figure out what’s going on,” said Chase’s mom, Tiffany Halstead.
Chase was diagnosed with spinal muscular atrophy just before his second birthday. “That was really, a really tough time for both of us to get through. Probably the worst time of our life,” said Tiffany.
Spinal muscular atrophy, or SMA, is a disease children are born with that affects the motor neurons causing the nerves and muscles to deteriorate over time.
“For these families before when you deliver this diagnosis, you can only imagine the horror they see. And we couldn’t offer them anything until this last December when this new drug came out,” said Dr. Britt Stroud, a pediatric neurologist with Lee Health.
The new drug, Spinraza, is the first FDA approved treatment for children with SMA. Patients receive infusions every four months to help stop the effects of the disease. Chase received his first infusion in April. “He’s able to kneel to the ground on his knees, which he’s never been able to do unassisted, and he can stand on one leg for maybe 2 to 3 seconds, which is totally new for him and he’s very excited about it,” said Tiffany.
Chase also has physical therapy to monitor his progression. “While this is the first FDA approved treatment for SMA, there’s a lot of hope in the near future including gene therapy and things like that,” said Tiffany.
A new treatment offering a new hope for families.
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Lee Health in Fort Myers, FL is the largest network of health care facilities in Southwest Florida and is highly respected for its expertise, innovation and quality of care. For more than 100 years, we’ve been providing our community with personalized preventative health services and primary care to highly specialized care services and robotic assisted surgeries. Lee Health - Caring People. Inspiring Care.