A week after her first birthday, Brooklyn Nichols was diagnosed with Spinal Muscular Atrophy (SMA) — a severe, progressive neurodegenerative disease that affects the motor nerve cells in the spinal cord and other muscles.

“At the time when we found out that she had spinal muscular atrophy, I had never even heard of it before in my life,” Keanna Nichols, Brooklyn’s mother, told The News Courier. “It really was a challenge trying to navigate the unknown at the time. When we sent her to a doctor in Nashville they gave us the prognosis that she would not make it past the age of three. It was a really tough time for us as a family.”

The rare disease, which affects approximately one out of every 10,000 babies, causes basic life functions such as breathing, walking and swallowing to become increasingly difficult. 

Keanna mentioned how devastating, especially at a time when there were no approved treatments, the news was to receive. According to the Muscular Dystrophy Association, SMA is a leading genetic culprit of infant mortality.

However, this Athens 8th grader has already defied and greatly exceeded the odds that were placed upon her with fervent determination, spirit and the faith that anything is possible. 

“We are a family of faith, so we did not stay in those gloomy moments too long,” Keanna said. “We always tried to pick ourselves up and encourage each other. We started looking for different resources like therapy and connecting with others that have SMA to make the journey a little easier. I attribute our faith, and the support of our family, to Brooklyn being where she is today.”

Despite all of the challenges she has faced, at just 13 years old Brooklyn has already authored two children’s books with the help of her cousin — educating and inspiring those like her with a cheerful presence that resonates in every room she is in.

“She makes us feel like things are going to work out in our good no matter what,” Keanne said. “Even when she has been back and forth in the hospital, she has been the centerpoint of our family that we can always turn to.. When we realized that an FDA approved medication came out, we got a renewed sense that everything is going to be okay.”

In 2020, Brooklyn began taking part in a groundbreaking new treatment called Evrysdi. This revolutionary medication is the first-ever at-home treatment for SMA, and according to Keanna it has been nothing short of life-changing for Brooklyn. 

Previously, Brooklyn had received spinal injections once every three months to treat SMA. Keanna said that Brooklyn hated going to the hospital, and at the height of the COVID pandemic, Evrysdi was an answered prayer for the family.  

“She’s not in the hospital now unless it is a pre-planned surgery, so she’s able to maintain some of her strength better,” Keanna said. “The biggest thing is focusing on the things that she can do, we are big dreamers around her, so we don’t think that there is anything that can stop her. I always say to her ‘Oh, the place that you’ll go,’ because there is no limit to what she can accomplish.”

As National Rare Disease Day swiftly approaches on Friday, Feb. 28, Keanna has encouraged all of those families that may have received a similar prognosis to never give up. 

“Always be positive and find other things that you can do together,” Keanna said. “Just because we are not able to play baseball or basketball, we can still do so much together as a family. We are also very blessed to be a part of the Limestone County Schools System, because they are always showing up and creating things for her to be involved in. I think all of those have been great attributions, but the biggest thing is to stay positive and never be burdened by what you can’t do — be excited about all the things you can do.”