It's been nearly six years since Heather Hurlburt lost her son, Karter Harlan, to Spinal Muscular Atrophy.

August is SMA Awareness Month. Since her loss, every year Hurlburt and many other families affected by SMA, dedicate the month to raising awareness about the disease. 

SMA is a progressive neurodegeneative disease affecting the motor nerve cells in the spinal cord. 

Hurlburt hopes sharing Karter's story not only keeps his memory alive, but also sheds light on a disease that's vitally important to catch early. The Winamac baby was just seven months old when he lost his battle on September 25, 2017. 

When Karter was born, doctor was unaware that anything was wrong with the seemingly healthy boy. By the time the disease was discovered, it was practically too late. With SMA, early detection and treatment is imperative. The disease affects the muscles used for activities such as breathing, eating, crawling, and walking. 

As Karter grew, Hurlburt subtly began to notice something wasn't right. 

As time went on, Hurlburt became desperate for answers. Karter's condition was medically beyond anything local doctors could handle. Hurlburt's answers were finally found at Riley's Hospital for Children in Indianapolis. 

Approximately one in 50 people, more than six million total, is a genetic carrier for SMA. According to curesma.org, each year thousands of infants in the U.S. and around the world are born with SMA. SMA also impacts children, teens, and adults from every background, race, and gender. 

Since Karter's 2017 death, advancement in drug discovery to treat the disease has rapidly progressed.

In 2019, the FDA announced the approval of Zolgensma, a gene therapy, to treat SMA in children under the age of two. The therapy alters the under lying genetic cause of SMA, permanently stopping the disease. 

The approval was a game changer, being the first in the line-up of gene therapies promising a cure for this inherited and deadly condition. 

Although it's arrival was too late to save Karter, Hurlburt says the journey she had with her son and the SMA community is one that she will never forget. Hurlburt continues to participate in events, and show support to those affected by SMA as much as she can. 

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