Jul
28
Written by:
Rick Staab
7/28/2010
We all got to spend some time this past week with a couple of families that drove down to Florida for the week from New York to have their children receive Deep Brain Stimulation surgery from DR. Kelly Foote and Dr. Michael Okun. These kids have had multiple surgeries and are hoping that the doctors here at UF/Shands are able to help them. Tyler, Samantha, and Luke played with them and their syblings while the night before surgery started and then we all went to be with them as they waited for the surgeries to be over. It waas another great family that we feel close to now and has dealt with tramendous difficulties. I hope and pray that their children get relief and I am determinde to motivate the researchers to find a cure.
Tyler and Luke decided they were getting Mohawks this week. They did get them and I did not recognize them when I got home. I am praying their hair will grow out before the golf tournament in a few weeks. (The Tyler's Hope Golf Tournament is sold out again and the waiting list is growing). There are still ways to be hole sponsors.
Tyler and Samantha have been having more movements than normal. The doctors are trying different settings of their DBS but it does not seem to be effecting them yet. Tyler continues to try and gain weight but it is an uphill battle at this point.
Thank you for all of you support and don't forget to spread the awareness about Dystonia.
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