February 21, 2010

I am disabled.  I have a rare disease called Dystonia. I am LUCKY.

I am disabled. It has taken my 24 years for me to say this.  I have spent my entire life as I know it making up every excuse in the world why I had a limp or walked funny.  Today this changed.  Rick Staab, founded Tyler’s Hope and presented the team at UF – Shands a check for $1M to fund further research.  My family and I know this hospital all too well my sister Suzie has been and out of this hospital for multiple brain surgeries and battery replacements.  Today it dawned on me how lucky I was.  Without the help of so many foundations – DMRF, Bauchmann Strauss, Tyler’s Hope to name a few, I could be in a wheelchair today living a life in wheels.  Instead, I am always training or putting on a fancy pair of heels because as I told Dr. T the week before surgery – “if this thing works I will always have the cutest shoes” (much to my parent’s dismay).

I am lucky. I have an amazing foundation.  I have an amazing life. I have been fortunate to attend 2 amazing educational institutions, work at amazing companies, travel the world and most importantly have amazing friends and family.  I have parents that have always supported in me in things that most thought I couldn’t do.  I have a beautiful sister though struck with much worse Dystonia than me supports me every step of the way in my endeavors.  I have amazing friends – I always remember they day when one of them said what limp? as i could barely finish walking a NY block in less than 30 min.

I have Dystonia.  I am thankful to everyone who has ever supported Dystonia research.  Thank you, without your donations I would never be able to think of running a marathon.  When I cross a finish line, those are tears of joy.  Most don’t realize that every run whether a 5k or 26.2 means I have to think of every step.  Running is a gift for me, a gift most thought I would never have.  Thank you to all the donors and families that make running for me possible!  Tears are in my eyes as I write this, but those too are tears of joy!


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