Teen struggling with rare disease taken aback by friend's gesture: 'She was right'
Six years ago, in 2014, New Jersey native Trinity Jagdeo learned that her best friend Alexus Dick was hospitalized for Spinal Muscular Atrophy Type 2 — a rare disease that causes the nerve cells in the brain and spinal cord to deteriorate.
The two had known each other since kindergarten, and Jagdeo wanted to be there for her friend. The two would watch TV together during Jagdeo’s visits to the hospital, but Jagdeo noticed that Dick didn’t have anyone on screen who could inspire her.
“We’d watched all of the movies that she had lining her room, and I took note of how drained she was,” she said in an interview with Today. “We’d watched all of the movies that she had lining her room. She had nobody to look up to while she was going through that battle.”
Determined to change that, Jagdeo first contacted Disney, in an effort to get the production studio to create characters with disabilities. When she didn’t hear back, she reached out to her mother, who had prior experience starting a business. The two worked together to create a nonprofit in honor of Dick.
As part of the process, Jagdeo, who was 17 years old at the time, used a drawing pad and Amazon’s publishing tools to create characters that her friend could relate to. Since launching her nonprofit, she has written three comic books — two of which (Alice the Ace and The We Can Squad Saves the Day) are dedicated to Dick and one of which (Zappy Zane) is dedicated to Dick’s brother, who also has spinal muscular atrophy.
“I was excited when I realized what she was doing,” Dick told Today. “She was right, there were no characters with disabilities.”
Jagdeo has given back in other ways as well.
“We have donated wheelchairs, personal items, medical equipment, and around $10,000 in monetary donations within the past two years,” Jagdeo, who is now 20, wrote in an emailed statement to In The Know.
According to Today, the two remain close friends, and Jagdeo hopes to continue creating more books with the goal getting them sold at Barnes & Noble.
“I love all of the kids I write about, and they all inspire me,” she told the publication.
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