Rare childhood disease survivor becomes marathon runner

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Sunday, July 3, 2022
Rare childhood disease survivor becomes marathon runner
On the 4th of July, "Walk Strong Across America" will take steps towards a cure for Juvenile Myositis.

PHILADELPHIA, Pennsylvania (WPVI) -- "My journey started when I was eight years old," said Alexandra Hackney from Northeast Philadelphia. "One morning, I woke up and my eyes were completely swollen and I had sores that opened up on my fingers."

Hackney, now 26, was just beginning her harrowing battle with Juvenile Myositis.

According to the Myositis Association, the rare disease affects between two and four children under the age of 18 per million.

"Before I was diagnosed, I was a very athletic, you know, skinny, young kid and you know, I was involved in soccer and lots of sports," said Hackney. "And when I got put on the medication, I must have gained like 40 pounds."

The treatment caused Hackney's face to bloat and frequently turn red. The condition also kept her away from sunshine, which was considered dangerous. Between the physical effects and time spent in the hospital, Hackney experienced a stunted childhood.

"I really wasn't very active until maybe three years ago when we really started the running," she said. "Since then we've been completely consistent."

Now in remission from the disease, Hackney is enjoying an active lifestyle as a marathon runner and school psychologist in New York City. She and her boyfriend routinely participate in marathons in the Philadelphia and New York area.

Her dedicated training will no doubt make her next challenge a piece of cake.

"I'm really looking forward to walking on the Fourth of July for 'Walk Strong Across America' to fundraise for a cure and, you know, continue to advocate and spread the word," said Hackney.

Walk Strong Across America is a nationwide call-to-action that encourages families to fundraise and walk about their hometowns to raise awareness for Juvenile Myositis. It's an essential part of the Cure JM Foundation's important work.

"The Cure JM Foundation currently is funding about $5 million a year in active research, which includes two clinical trials for promising new drugs that could really help the speed at which children can recover from this disease," said Executive Director Jim Minow. "And so, Walk Strong Across America really makes our research possible."

To learn more about Cure JM Foundation or how to participate in Walk Strong Across America, visit their website.

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