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Jul
29
Written by:
Rick Staab
7/29/2010
Please note the new pictures under the event pictures. We will be updating these for each of the events.
The following is a letter I received today that I thought I should share.
Dear Mr. Staab,
You don't know me, but I have spent a good portion of this evening reading the updates on your precious family through the "Tyler's Hope" website and trying to find a way to contact you all and let you know what a huge inspiration you are to so many of us.
My family decided to eat at Outback Steakhouse last night here in Gainesville, and upon entering, we were directed to a table in the back. As I walked toward the back of the restaurant with my son, I met eyes with a gorgeous girl who took one look at us and immediately smiled. So many times at first glance, we are not met with smiles...but with awkward furrows and looks of sadness. But this girl, she smiled as soon as she saw us...it was a smile of understanding. A smile of "I know what you are going through. I then noticed that she was in a wheelchair and realized that I knew her face from somewhere.
You see, my son...the one I was holding last night...has mitochondrial disease, and he is attached to an oxygen tank and cannula for a majority of the day to assist in his breathing and some of the effects of this disease.
I knew I remembered your lovely daughter's face from somewhere, but it didn't completely dawn on me until I looked around at the rest of your family and recognized Tyler...mohawk and all. In fact, my girls were enamored with your sons' mohawks. :) They loved them.
Your family has been on my mind all day, and I have been burdened to write to you. I wanted to let you know that from the "across the tables" smiles and interactions I witnessed, you and your wife are doing an amazing job raising your children. They seem to be very sweet and kind. I also wanted to tell you "thank you" for being such an amazing example to so many of us facing difficult challenges with trying to find treatments and cures so that our children may live to be adults...and healthy adults at that.
My son, Nathan, is 2-1/2 and has been seeing numerous sub-specialists at Shands since he was just a couple of weeks old. After almost a year of testing and searching for the culprit behind the issues he had since birth, he was diagnosed with mitochondrial disease shortly before his first birthday. Mitochondrial Disease is a multi-systemic neurodegenerative disease, for which, like your situation, there is no cure. We have recently been involved in fundraising and awareness activities for our organization (umdf.org), and seeing your influence in our community to raise funds and awareness to find a cure for dystonia is such a huge example for us.
Thanks for your example. And thanks for sharing your journey and your children with us. They are remarkable!
Sincerely,
Amber
www.lifewiththeferrells.blogspot.com
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