TJ

Meet TJ

TJ is a teenager who loves fishing, video games, the beach, and spending time with his friends. Give him a fishing rod on a cool morning and the chance to catch a red drum, and he’s happy. When he isn’t fishing, you’ll probably find him playing Fortnite and talking with his friends. He loves Outer Banks, Fast & Furious, Falling in Reverse, the color electric green, dogs, and his favorite meal—chicken Francese. One day, he hopes to travel back to places with crystal-clear water like St. Thomas, catch a mahi-mahi or swordfish, and maybe even own his own fishing charter.

TJ began experiencing symptoms around age 11 or 12 and learned in 2025 that he has SMA-PME (Spinal Muscular Atrophy with Progressive Myoclonic Epilepsy). Since then, life has changed in ways most kids his age never have to think about. TJ now uses a power wheelchair and other adaptive equipment to help him navigate everyday life. When asked what the hardest part of SMA-PME has been, his answer was simple: not being able to walk, fish, play baseball, hang out with his friends, or just go do something whenever he wants.

But SMA-PME hasn't taken away the things that make TJ who he is. He still loves his friends, fishing and gaming, and he says his parents—and his own determination—help him through the difficult days. He also wants other people living with SMA-PME to know that “it gets better learning how to deal with it.”

When TJ talks about his future, one hope stands above everything else: he hopes gene therapy will work and that someday he will be able to walk again. Research means something very real to him. When asked what he would do if someone handed him $1,000 today, TJ didn't name a new gaming system, fishing equipment, or something for himself. He said he would put it toward SMA-PME Research.

And when asked what he would tell someone considering donating, TJ said:

Watching someone we love navigate an extraordinarily rare condition has given this mission a very personal meaning. We are helping share his story so that more people learn the words SMA-PME, more families know they aren't alone, and more attention and resources can reach the research these children are waiting for.

TJ wishes people knew about SMA-PME because, as he puts it, “it is hard to explain what it's like having it.” So we're helping him tell his story.

TJ is a fisherman. A gamer. A baseball fan. A friend. A son, nephew, and young man with some pretty big dreams.

And one of those dreams is simply to walk again.