Sticking to a New Year’s resolution may better our lives in the short-term, but thinking about what I will be remembered for matters more to me. So, instead of committing to a resolution this year, I am focusing on the concept of a legacy. After I am gone, what effect will my life have had on others?
In the world of Friedreich’s ataxia, the rare disorder I am diagnosed with, perhaps no legacy stretches as broadly in scope as that of Keith Andrus.
Andrus was born a few days before Christmas in 1985. But he wasn’t diagnosed with Friedreich’s ataxia until he was in fifth grade, when poor balance while riding his bike and attempting to rollerblade could no longer be attributed to normal clumsiness.
A neurologist examined Andrus and delivered the devastating news to his parents: Andrus had a little-known genetic disorder called Friedreich’s ataxia, which eventually would rob him of most of his physical abilities, such as walking, hearing well, and speaking clearly, and it might lead to a fatal heart condition.
Despite discouraging odds and an unknown future, Andrus continued pursuing things he loved, such as spending time with friends and family, and fishing and other water activities. He continued to do these things even as FA progressed and the activities became more difficult.
His mother and stepfather, Raychel and Ron Bartek, were so struck by his courage that in 1998, the year after Andrus’ diagnosis, they co-founded the world’s first nonprofit organization focused solely on those affected by FA and devoted to supporting FA research, the Friedreich’s Ataxia Research Alliance (FARA). FARA connects patients with FA with others around the world, and funds and coordinates global FA research aimed at developing treatments and a cure. Since FARA’s creation in the U.S., other foundations focusing on similar goals have emerged to collaborate and co-fund FA research.
Because of Andrus, all of us affected by Friedreich’s ataxia are getting closer to accessing a treatment or a cure.
I regret not getting the chance to meet Andrus. His grandparents, whom he was close to, lived in my small Louisiana hometown, so he would often visit my area. We were born a month apart in the same year, and we were both diagnosed with FA in fifth grade, at age 11.
Andrus died on Jan. 22, 2010 from congestive heart failure, about a month after his 24th birthday. I am still here at age 35.
Andrus had a prominent tattoo across his chest that read: “How much time do we have?” Maybe the secret to leaving a lasting legacy isn’t focusing so much on the future, or making another New Year’s resolution. Maybe the best we can do is live with urgency in the moment.
Hopefully, the love, hope, humor, and insights we share will begin to form our legacy. As long as we leave the world a little brighter, and its people a little more comforted and hopeful, our legacy will have been worth the effort.
Maybe my own legacy won’t be as impactful as Andrus’, but I will try to kick FA’s butt, and I’ll note the Little Victories along the journey. I think that’s enough for me.
I hope I live to see a treatment or a cure for FA. When I do, I know that Keith Andrus has played a large role in getting us there.
Thank you, Keith.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?