Columbus, Georgia (WRBL) – The Peachtree City family cares for their 4-year-old daughter. She battles a rare disease that is a leading genetic killer of infants.
The aspenlite condition is extremely rare, affecting approximately 1 in 10,000 babies. Little did Aspen’s parents know that their lives would change after her daughter’s diagnosis.
“The doctor left the room and I was googling what SMA was. Oh, let’s not cry here… All I saw was death by age 2,” Aspen said. “And I cried all the way home. In any case, when I got back in touch with my family, they reassured me that everything would be fine.”
Aspen suffers from a rare neuromuscular disease. Spinal muscular atrophy (SMA) gradually destroys nerve cells in the brainstem and spinal cord that control vital skeletal muscle activity such as speaking, walking, breathing and swallowing.
Aspen continues to defy the odds as they progress each day.
“She’s grown up a lot,” said Tabitha Wright. “I mean, even more than the other two drugs she’s 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.
The Wright family says SMA newborn screening makes all the difference for babies to get treatment sooner.
“Getting screened for newborns means knowing they have it and getting gene therapy or starting treatment right away, which can prevent the progression from getting worse.
Aspen’s parents have adjusted to the new normal, but don’t let Aspen’s illness hold her back. .
“Don’t treat your child like a disabled child,” said Tabitha and Keith. “Regardless of whether you have SMA or not, do everything you can to keep your baby well.”
Tabitha set up a GoFundMe account in hopes of raising enough money to alleviate the stress of medical bills from Aspen’s treatment.