Saturday’s Spotlight: Friedreich’s Ataxia

Posted by on Sep 14, 2013 in experience, Explore, Fears, friendship, outdoor adventures, Outdoor recreation, Outside, River, sterotypes, whitewater rafting, wilderness | Comments Off on Saturday’s Spotlight: Friedreich’s Ataxia

Today’s Spotlight: Friedreich’s Ataxia

For the Fall Fling, we will be highlighting a group of clients each day, telling their story and showing how Splore’s adventures have changed their lives. We are raising money this week to support Splore’s outdoor adventure programs for people of all abilities. Your donations support scholarships for clients like Tom:

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Client Story: Tom Trovinger

Tom Trovinger is 38 years old and was diagnosed with Friedreich’s Ataxia (FA) in 1997. FA is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have it. Tom is coming out for his third river rafting trip with Splore this August.

I am going on my third rafting trip in Utah this year with an adaptive sports group called Splore. This was a huge step for me. Everyone who knows me personally always says that I have no business being on that trip. I don’t like water, bugs, camping out, being dirty, bathing in the river, etc. I don’t know exactly why, but this rafting trip is just something I love, for a number of reasons.

For that one week of the year, I feel absolutely free. I don’t have to worry about the outside world, or any of my circumstances. On every one of the rafting trips I have taken with Splore, I experience the joy of being a part of a loving group of people with FA, volunteers, and guides, and breathtaking views.

Splore makes sure you feel so much like you are part of the group and Splore values the unique contribution you bring to the outdoor experience.

I also absolutely love telling people about the trip, especially people that are afraid to go rafting, and/or believe I should not put myself at risk. It is a joy to me to accomplish something which others say you cannot do. Splore refers to the experience they provide people with as “Dignity of Risk”. This is a notion that I completely subscribe to. Historically, it was thought that to care for someone with a disability meant sheltering them from the world. Risk-taking was feared and avoided. Splore believes that there is dignity in risk-taking and that it is an inherent part of living a full and robust life. They are excellent at managing the risk of their adventures, so that every Splore participant feels empowered and dignified.

FA has taught me a lot. I think that if I had it all to do over again, I don’t know how much I change. FA has taken a lot from me, but it has also taught me a sense of urgency, to do what I do, and never stop fighting. It has made me who I am today. There have been days, like everyone has, that I don’t feel like getting up. I have felt like not doing anything, just basically giving up and quitting. Then I always think to myself, Tom, you can’t give up now, you have plenty of people to prove wrong today.

It won’t be long now, I can’t wait for August 14th.

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