Most people would consider odds of 1 in 50,000 not very likely to happen, but for Matt Rupel, those odds would fight against him. Matt was born with a very rare life-threatening disease, Friedreich’s Ataxia (FA) that ended his life on Aug. 5, 2017 at the age of 26. FA causes slurred speech, muscle and energy loss, vision and hearing problems, the inability to walk a straight line, severe curvature of the spine and heart problems.
To commemorate the one-year anniversary of Matt’s passing, his father, Bart Rupel decided to do what Matt had done in 2014 — have his head shaved to raise money to support FARA (Friedreich’s Ataxia Research Alliance) — a non-profit organization dedicated to finding a cure to the disease.
As Bart explained on his Facebook page, “My son, Matt Rupel, lost the physical battle with Friedreich’s Ataxia on August 5th, 2017. Matt lived a life of fearlessness and joy. He hated what FA did to him physically, but he did not let it stop him from pursuing his dreams and passions.
“When he couldn’t hold the trumpet anymore, he switched to guitar. Couldn’t drive a stick shift anymore, time for an automatic. Couldn’t ride a bike, time for a recumbent trike. All of these challenges Matt took on with determination, and remarkably, with joy.”
Bart’s Facebook post explained, “…it was getting time for me to get a haircut a few weeks ago, and as I was meditating that morning a thought came to me. Don’t. Let it grow out and on August 5th have Michael (Erkelens, who shaved Matt’s head in 2014) shave my head. I’m inviting others to shave their heads too. Ohana (Hawaiian for family) in the SF Bay Area can join me at our house to have their heads shaved. Oh, and yes, Michael has agreed to be the barber!”
In the Rupel backyard, Bart and seven of Matt and Bart’s friends had their heads shaved. The event was live streamed on Facebook and, although people gathered for a somber occasion, the mood was festive.
To donate to help fight FA, visit http://fara.convio.net/site/TR/Events/General?team_id=4021&pg=team&fr_id=1467