Friedreich's
Ataxia hasn't presented physical manifestations in my body, but the
repercussions of FA have rippled across my life in ways that have changed the
lives of many generations to come. Over the course of my life I have watched
this disease twist it's unending fist around two of my dear brother's bodies.
As a young child I remember running amok with Ryan, who is two and a half years
my senior, around our neighborhood with the numerous other children that lived
near us. I have seen videos and have my own memories of him biking, running,
laughing, exploring and enjoying his childhood. Owen, who was born four
years
after I was – lived a similar childhood as Ryan did, and even had his own
younger sibling to torment and explore with. Trevor was born three years after
Owen was, and nine years after Ryan. It was at this time that the gravity and
seriousness of the disease became apparent.
During my adolescence I was unaware
that I could, at any moment, begin showing symptoms; I was naively oblivious to
this fact, and until about a year ago was under the impression that I wasn't
'spared' from the two recessive genes that plague my brothers genotypes, but
that it simply had never been in the realm of possibilities for me. I don't
know when I finally comprehended the shocking probabilities that accompany FA –
but somewhere along the line it hit that I had been given a 25% chance of
inheriting FA and a 25% chance of not inheriting any of my parents recessive
genes. I was tested when I was 17, my blood came back negative for both of the
genes connected to FA.
A chain of events over the past two
years of my life have resulted in my desire to join Team FARA. My mom, Lisa,
had been toying with the idea of a fundraiser for awhile, but we needed
something that required less involvement than organizing a new local event.
Team FARA was exactly what we were searching for – the ability to simply create
a donation webpage, ask your friends and family to donate or share, and
compete in your choice of endurance event! It was exactly what we were looking
for; I set up Team Ryan and Owen Jones, wrote a letter to our supporters, and
started asking for donations!
I had already decided to compete in
the Annual Swim Around Key West which is a 12.5 mile open water swim around Key
West, Florida. What I didn't plan on was it becoming a successful FARA
fundraiser and to gain as many supporters and followers from my hometown of
Juneau, Alaska. I realized that many of our friends and family wanted to
help us, but had no direction or knowledge of how to do it. Once I started
asking for donations or help sharing the word about our Team FARA event, the
money started rolling in. I had set my original goal at $1,000; by the time of
the actual event (June 8th, 2013) Team Ryan and Owen Jones had
raised $5,000! One of my friends from the swimming community decided to compete
in the Key West Swim with me, Cody Brunette. He helped to make this event
successful by not only winning the entire event, but giving the
spotlight to Team FARA. This helped to spread awareness in a whole new part of
the country, basically the best possible outcome for our efforts!
I would like to continue to raise
money for FARA through the open water swims I am planning to do this summer,
but I need new ideas. I think I have about tapped out my friends bank accounts
in the Juneau area, so I was thinking a new personal goal would be to recruit
new team members. We all need to be able to use our own personal influence to
inspire others to pitch in and help out as well. The amazing thing about this
is that it not only helps out an incredible organization that is working
towards a cure for FA, but it also helps out your own soul.
Helping
others, doing something selfless or leading others to do the same is a cure for
our own personal diseases. It literally does a body good to help someone
besides yourself. It's an important lesson, and an easy cure for something you
didn't even know you had. When was the last time you experienced pure joy? For
me it was Saturday June 8 on the beach in Key West, Florida. I was exhausted,
sick, salty, and sore, but as I walked out of the water after swimming for over
five hours in the wavy Atlantic/Gulf waters, I only needed one glimpse of Ryan
waiting for me on the beach to feel a rush of happiness – it was the best
moment of my life. These moments are there for everyone – it's up to you to
make a difference in your own life, as well as thousands of others that need
your help. I am proud to be part of Team FARA. I have many more swims and many
more joyous moments to live for, and I have Team FARA to thank for them.
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