True Inspiration by a Soccer Player with 8 Rare Diseases

A story of courage, strength, perseverance, and selflessness… of a kid battling an unimaginable battle.

Alexi and Evan


“My name is Evan and I’m now a junior in high school.

I grew up playing soccer and dreamed of going pro one day. An unexpected pre-season injury when I was 9 years old (8 years ago) started a new path for me. It was a very severe injury that took multiple surgeries and re-learning to walk before I was able to play again. Unfortunately the injury brought out multiple genetic diseases that my family had no idea I had or were in our family.

I continued to play soccer with support from my family and…

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