COLUMBUS, Ga. (WRBL) – A family from Peachtree City is caring for their 4-year-old daughter as she battles a rare disease that is the leading genetic cause of deaths for infants. 

Aspen Wright’s condition is so rare, it affects approximately 1 in 10,000 babies. Aspen’s parents didn’t know their lives would be turned upside down after their daughter’s diagnosis.

“The doctor had left the room and I was googling what SMA was and, oh, I’ll try not to cry here… all I saw was death by two years old,” said Aspen’s mother, Tabitha Wright. “And I cried all the way home. Anyways, going back to getting in touch with the families, they reassured me that everything was going to be okay.”

Aspen is living with a rare neuromuscular disease. Spinal muscular atrophy (SMA) progressively destroys nerve cells in the brainstem and spinal cord that control essential skeletal muscle activity like speaking, walking, breathing, and swallowing.

Aspen continues to defy the odds as she makes progress everyday. 

“She has just grown significantly,” said Tabitha Wright. “I mean, even more than just the other two drugs that she has been on. She’s a walking, talking miracle. I mean, she walks everywhere.”

The U.S. Secretary of Health and Human Services added SMA to the national recommended list for newborn screening in 2018. Georgia was an early adopter, adding the disease to their newborn screening protocol in 2020.

The Wright family says SMA newborn screening makes all the difference in order for infants to get treatment sooner.

“Having the newborn screening means that they know they have it and they’re given gene therapy or they start treatment straight away, which stops the progression from getting worse,” said Aspen’s father, Keith Wright.

While Aspen’s parents have adapted to their new normal, they don’t allow Aspen’s disease to hold her back. If anything, they use SMA as a drive to strengthen and uplift her. 

“Just don’t treat your kids like as a disabled child,” said Tabitha and Keith. “Do everything you can to keep that baby going, whether they have SMA or not.”

Tabitha has set up a GoFundMe account in hopes of raising enough money to alleviate the stress of the medical bills from Aspen’s treatments.