Bonded by rare muscle disorder, woman and sixth grader raise money for a cure
BOSTON -- Meet Lexi Pappas and Kate Zwickau: they have a rare disease called facioscapulohumeral muscular dystrophy or FSHD. It's a genetic muscle disorder that leads to the weakening of skeletal muscles over time.
"For me, even just in the few years I lost my ability to run," Lexi told WBZ-TV.
They met six years ago when Kate received her diagnosis of spontaneous infantile FSHD and her mom found Lexi from YouTube videos. She wanted her to have someone to relate to.
"I'm like 'what is what is wrong with me?' and then I'm told that there's more people like me and I'm like 'yay, I'm not by myself," Kate said.
FSHD is typically a genetic disorder. Lexi has family members with it, but sixth-grader Kate is the first in her family to get the disorder.
Kate lost her ability to walk three years ago when she was in third grade. For Lexi, having FSHD impacts her daily life, and how she views her future.
"I haven't had kids yet but I'm getting there and I think about being able to have kids. Is that even a possibility? Being able to take care of my kids? So there are everyday things that I'm not able to do, that having a cure would mean a lot," Lexi explained.
They're both working towards raising money and awareness to find a cure, something that Kate said would change her life back to normal. "Well, so I can finally walk actually for the first time properly in three years. It will probably be more than that, but [it would] just make my life easier," Kate said.
Through Lexi, who leads the annual New England Walk and Roll for FSHD, Kate and her family have been able to find a community of people with the disorder. They're hosting the event this weekend to raise money for awareness, research, and trial readiness.
"We still need to raise awareness and raise funds for research and to find a cure someday," Lexi said.
So far they've surpassed their biggest goal yet of $60,000 dollars and are almost at $80,000 raised.
