Story of Healing

Kaden Smith

Lincoln Parish

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"We love Dr. King. He wasn’t just an orthopedics doctor, he truly specialized in spine surgery."

At just eight weeks old, Kaden Smith was diagnosed with RSV and Pneumonia, but mom Nicola, would soon learn her son was facing a more serious diagnosis. 

“We were rushed to Shreveport where specialists thought there was something going on more than just RSV. They ran a lot of tests, they found white matter on his brain, they did muscle testing. We found out Kaden has Merosin-deficient congenital muscular dystrophy,” explained Nicola.  

Nicola was proactive, and immediately started researching congenital muscular dystrophy. Finding a conference online, she bought a plane ticket and her and husband, Jeff, decided to go absorb as much information they could in order to provide Kaden with the most comfortable and normal life possible.  

“We were devastated. I never even knew what congenital muscular dystrophy was. I knew my child would be in a wheelchair,” says Nicola.  

“We saw other children living their life normally, driving their own power chairs and that’s where we saw our future. We saw that in a way, everything would be okay,” shares Nicola. “These kids were smart and sweet and happy, and we took that away from it. We are very proactive with that.” 

When Kaden was around two years old, he started seeing Dr. Andrew King, an orthopedic surgeon at Children’s Hospital New Orleans.  

“We love Dr. King. He wasn’t just an orthopedics doctor, he truly specialized in spine surgery,” explains Nicola. “It was important to find doctors with the same goals for Kaden that I had.” 

Kaden also saw gastroenterology provider, Dr. Brent Keith, at Children’s Hospital for stomach issues.  

“Kaden has had to battle so many stomach issues. For his disease, it is so rare and new, we are still learning everyday about how to navigate these G.I. issues. Dr. Keith has been wonderful,” shares Nicola.  

Nicola says her family is fortunate to have a good neurologist and cardiologist in north Louisiana, and after 7-8 spine surgeries, they are blessed to have Children’s Hospital as a place they can trust.  

As a beacon of light for other families who also have children diagnosed with congenital muscular dystrophy, the Smith family is outspoken about both the challenges and the victories of this disease. Their story is shared through their family business, Love Bug Apparel. 

“It started as Muscle Club Apparel when we first started to design t-shirts. I was a teacher when we got the diagnosis for Kaden, and I had to stop working to take care of Kaden – which means we lost our income,” shares Nicola. “My husband is a graphic designer, so he started selling shirts worldwide. I was able to stay home and tend to Kaden and afford insurance and everything else we needed.” 

The shirt that was known worldwide said this: “Stay strong for those who cannot.” It’s a sentence Nicola and her family still live by every day.  

To learn more about pediatric gastroenterology and orthopedics at Children’s Hospital New Orleans, head to www.chnola.org