A devastating diagnosis understandably brings a halt to life for many people. A moment of overwhelming shock, abrupt grief and a gripling reality of what is to come that most can relate to. Even if never faced with a diagnosis, most of us experience such devastation alongside a loved one at one point or another.
If you would like to help fund Sean's efforts to help other rare disease patients climb mountains or complete marathons to show them that life is still worth living, you can donate at our GoFundMe before Sunday, September 30, 2018. All proceeds go to fund his non-profit organization, De:terminence.
Sean Baumstark was given such a diagnosis when he was 25. He had been dealing with strong bouts of fatigue and a slight, intermittent imbalance when walking. What he thought may have been an issue with an easy fix, perhaps some extra-strength Red Bull, turned out to be a much larger issue. An issue that had been present since birth, yet moving at such a slow rate of progression that neither Sean nor his family had any inclination that something was wrong. Terribly wrong.
Friedreich's Ataxia (FA)
Friedreichs Ataxia (FA) is a rare debilitating, life-shortening, degenerative neuromuscular disorder that affects approximately 15,000 people worldwide. The condition worsens over time and has a multi-system impact, essentially causing damage to everything but one’s cognitive abilities. Most are diagnosed in early childhood and are confined to a wheelchair before they finish high school. The effect of FA on one’s heart - cardiomyopathy - is typically what ends life early, before age 30, on average. There is currently no treatment or cure.
Such a diagnosis will force anyone to pause and struggle to understand and cope with a new reality. Sean had no idea what to do at first, but he knew he felt fine, seemed fine and still had many of his abilities in tact. The delivery of his diagnosis was very simple, straight-forward and failed to offer any sense of hope.
What did Sean do to fight back?
In response to his diagnosis and in an effort to redefine his future, Sean started doing things the doctor said he wouldn’t be able to do someday. He began hiking, running, cycling and exercising more intently - all things that require a sense of balance and muscle coordination and control. A year after his diagnosis, Sean carried the torch in the Olympic Torch Relay and ran his first event, completing a half marathon in the California International Marathon. He also started hiking and set out to climb California’s tallest peak, Mt. Whitney.
Quickly, Sean realized that others were drawing a sense of hope and encouragement due to his response in the face of such a life-altering prognosis. This led Sean to develop a nonprofit that simply, yet profoundly aims to help people identify reasons to get out of bed, no matter what they are up against!
De:terminence was born
De:terminence, Inc. launched with a mission to help improve the quality of life...through athleticism and physical achievement. Science may not have a cure yet for cancers, ataxias, beschettes, and so on, but that shouldn’t stop anyone from living life to the fullest today, in the midst of challenge! Sean likens De:terminence to the Make-A-Wish Foundation, however instead of sending kids to Disneyland or a concert, De:terminence helps people achieve or accomplish something important to them - be it a marathon, a 5k or climbing a mountain. De:terminence isn’t looking for cures, they are helping people achieve while waiting for cures to be found. De:terminence is helping others climb mountains, cross finish lines and ultimately, working to cure hopelessness!
If you would like to help fund Sean's efforts to help other rare disease patients climb mountains or complete marathons to show them that life is still worth living, you can donate at our GoFundMe before Sunday, September 30, 2018