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About my precious Sullivan and Rogers Hartmann/BEAT DYSTONIA

Posted Feb 19 2010 11:34am

My precious 9 year old daughter Sullivan has been having some issues since DBS, so we flew to Fort Worth, Texas to Cook's Children Hospital to have her evaluated and try to determine whether further surgery would be needed.

I contacted Rogers Hartmann through Facebook and she kindly gave me her personal number so we could talk things through.

I asked if she could help us and without pause, she said, "Absolutely. Tell me where and when and I will be there". She offered to just sit in the waiting room or sit in on the appointments.

She spoke with me before we left for Fort Worth and it was such a relief to know that she would be there to help us. At times, I have felt so alone in trying to help my wonderful daughter.

During one of the calls we had with Rogers, she pulled in another advocate who has children with generalized Dystonia and our conversation made me feel more prepared for my second crucial meeting with our doctors. What we had determined on the phone call, was what the doctors has determined, as well.

For the first visit, Rogers desperately tried to get to Cook's, but was unable to due to the freeway being closed after Dallas's snow storm. She sat in gridlock for as long as she could and then had to turn around.

The next day, she was able to get through and arrived in Fort Worth.

Upon Rogers' arrival, Sullivan and I immediately felt safe and special. She was so much fun and so positive.

At the end of the night, my daughter was wrapped in her arms with a huge smile on her face wearing Mardi Gras beads and masks.

What a great way to end a trip that could have been frightening and lonely.

Here is a letter and poem that Sullivan wrote for Rogers before we flew to Fort Worth:

"Hi Rogers, I have not met anyone else with Dystonia. I have Dystonia in my left foot. I had brain surgery in my head and I can walk again. I am going to be happy to meet someone with the same thing I have. Dystonia is pretty tough, isn't it? Well for me it is tough with dystonia. So I heard that you can have it in your neck (I won't giggle, I promise). I know how it feels to be giggled at. I know I will be friends with you.

From Sullivan

P.S. Here is a poem for you.

Roses are red
Violets are blue
I know how it feels
to be you, Rogers.

With love,

Trish
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