July 13, 2019

July 1st was the first day for patients to be seen at the new UF Fixel Institute and Tyler was the first patient to be seen. The institute is also home of the first dedicated Dystonia Center which incorporates compassionate clinical care and research focused on Dystonia.  Tyler is currently doing work with InterMed and helps with whatever needs we have. He is living in an apartment behind us and attends lots of car shows. Tyler has had batteries replaced again this year but the surgeries went well.
 
Samantha just had her second battery replacement surgery in 6 months and although the surgery went well we are keeping an eye on the area for infections.
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She is scheduled to go with St Michelle to visit the University of Alabama this week before her orientation and start of school the first week of August. She will be in the nursing program.
 
Luke is starting high school this year and is going to a new school - Oak Hall Academy. He leaves soon to participate in the UNC team camp for high school teams. He is working out and eating right. He is still symptom free of Dystonia but also continues to be one of the most ardent supporters of Tyler’s Hope and his siblings.