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Stories from the Heart: Heart Day

Julia holds the cherished roles of being both a sister to Walker and a beloved aunt to Jackson. Despite the distinct moments in time that brought Jackson and Walker into the world and the uniqueness of their personalities, they are bound together by more than just family ties—they share the unspoken connection of battling an ultra-rare disease.

Julia grew up with her brother, Walker, going to the hospital frequently. “I didn’t understand why he always had to go to the doctor or take a bunch of medicine all the time. I attended appointments with him and did not really understand what was being discussed.”

Julia realized something was different about her brother when she noticed he was very small and had low muscle tone. Walker loves baseball and was on a little league team. He was slower than the other players and had difficulty making it to first base.

Julia, three years younger, didn’t know the extent of what Walker had gone through when he was born. He had cardiomyopathy, but there weren’t a lot of options for heart transplants around that time.

It wasn’t until 2009 that Walker’s cardiologist called and said that he may have Barth syndrome.

In October 2009, Jackson was born. Julia noticed in the first picture she received of her nephew his feet were blue, and she knew something was wrong. Jackson was airlifted to a hospital in Atlanta, where he stayed for 172 days. Julia met her nephew in the NICU and didn’t know if that would be the last time she would ever see him.

“I just remember thinking he was perfect. Like, he was the cutest kid I have ever seen. Now, looking back at the pictures, he did not look good. That was a scary picture.”

Jackson received a heart transplant on February 1st, and from that day forward, the family declared that “Heart Day.” When Jackson was around 3, his mom started the tradition of bringing cupcakes to Jackson’s school so his friends and teachers could celebrate with him. The class was curious about the cupcakes. “It’s because you’re my friends,” Jackson would say, “and I love you.”

Today, Jackson is 13 years old, and his family describes him as joyous and very friendly. Much like Walker, Jackson found a love for baseball. He plays in a league that is specifically for children with special needs. He also has an interest in music and plays the drums and piano. Jackson and Walker have a special bond, and their relationship continues to grow as time goes on.

Jackson’s mom discovered the Barth Syndrome Foundation after traveling to Maryland to meet with a doctor to learn more about Barth syndrome. That’s when they realized there were others out there with the same ultra-rare disease, and they were not alone.

Since then, the family has been involved with Barth Syndrome Foundation’s advocacy efforts. They work hard to make sure new therapies can be available. New therapies will give both Jackson and Walker opportunities for happier lives doing what they love.

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