As many of you may or may not know, children with A-T (ataxia-telangiectasia) face numerous challenges on a daily basis. Tasks that seem "simplistic", ones that we take for granted, are often times some of the most daunting things for a child with A-T and their caregivers to work through. Think of your routine this morning when you woke up. What did you do? Me? I'd start off by saying I got out of bed, brushed my teeth, got a shower, got dressed, etc and then drove to work. Simple right? That doesn't sound too bad. Well, for a child with A-T it is much more complicated than that. Take task #1 for example, getting out of bed. What does getting out of bed require? Sitting up, standing, and then walking. Again, something not many of us thing of. Tasks we, those who do not have A-T, do not even think of as being complex can be some of the most challenging moments of the day for a child with A-T.
My younger sister, Sydney, was diagnosed with A-T at the young age of 4. Now, she is 11 (soon to be 12) years old and entering 6th grade at our local middle school. Overall, she is a very happy child, considering the many obstacles she faces on a daily basis. Sydney requires varied levels of support for everyday activities including feeding, washing hands, talking, etc.. Her perseverance in conquering theses challenges on a daily basis, have inspired me to challenge myself.
A few months ago I embarked on a personal journey- a journey for a healthier and more physically fit lifestyle. For Sydney and many other like her who have A-T, staying "healthy" is crucial to not only their everyday success, but the quality and length of their short lived lives. If Sydney needs to be healthy what was my excuse? On days I feel like giving up or giving in, when I would much rather relax after a "challenging" day than exercise, I think of Sydney. Sydney does not have the choice to give up or give in. She does not have the choice to relax. She is a constant fighter and will be for the rest of her life. Sydney keeps me going and inspires me to live a healthy and purposeful lifestyle, being as positive as possible, even when giving up and being negative seems like much better options.
To honor Sydney and all other with A-T, I have decided to challenge myself- to put myself through obstacles I consider unconquerable. I am participating in the Tough Mudder on August 16, 2014. In short, the Tough Mudder "is a 10-12 mile (18-20 km) obstacle course designed to test all-around strength, stamina, teamwork, and mental grit. Tough Mudder is Probably the Toughest Event on the Planet. Probably." I could not think of a more perfect event to honor my sister and experience, in my own way, what she faces everyday- obstacles that push and test one to their extreme and ultimate limits. Here is the Tough Mudder website, so you can take a look at some of the challenges and obstacles I will be facing! https://toughmudder.com/
My goal is to raise a minimum, yes, minimum of $500 to donate towards finding a cure for A-T, so my sister and all others with A-T can have longer, healthier, and happier lives. Please feel free to contact by via social media, email, or cell to discuss any questions about Sydney, A-T, this fundraiser, or the Tough Mudder that you have. Together we will work together to support Sydney and other children like her!
P.S. Donations are tax deductible. If you are interested in finding out how, please let me know!