Ashlyn's Story:
My name is Ashlyn and I am five years old. When I was one year old, an unidentified viral infection caused me to break out in a rash and made me run a high fever. Twenty four hours later, I went into a twenty minute grand mal seizure and was rushed to the hospital. The viral infection had gone to my brain causing significant damage to the left hemisphere, and caused a
stroke. This caused paralysis on the right side of my body. I then started my road to rehabilitation; learning how to properly swallow, sit up, crawl, etc. again.
One year after my illness I started having seizures which progressively worsened over the next couple of years. I went from having one seizure every couple of weeks to multiple seizures a day; even while I was asleep at night! My doctors tried multiple combinations of medications to make my seizures stop, but they continued to increase in amount and severity. Some of the medications reeked havoc one my little body; I was hospitalized two times for pancreatitis.
After running out of options for medication and my seizures spiraling out of control, the decision was made for me to have surgery. My neurologist was able to determine that all of my seizure activity was coming from the left hemisphere of my brain. In July 2009, I had a hemispherotomy where sections of my brain were removed and the left hemisphere of my brain was disconnected from the right hemisphere. Because I am still young, the right hemisphere will take over many of the left hemisphere's functions. The surgery took a toll on my body; once again I was unable to sit up, crawl, walk, etc. I stayed in the hospital for two weeks and then was transferred to an in-patient rehab facility for five weeks. There were days I just wanted to sleep, cry, not eat or be around anyone. I fought through those dark days and worked hard to regain what I had lost. I ended up walking out of the rehab facility! It has been one year since my surgery and I feel myself continuing to get stronger. So far the surgery has been a success because I have not had anymore seizures!
Two years post surgery without any seizures will mean the procedure was a success. I still have weakness on my right side which requires a lot of therapy (speech, aquatic, physical, occupational, horse, etc). I wear a brace on my right foot, an apparatus on the lower half of my body and an apparatus on my right hand to help my body be more functional. I don't have much function in my right arm/hand so the left hand has had to step up and learn to do double the work. The occupational therapy is very important because it will help me
get the most function I can out of my right hand. The medical and therapy expenses have mounted over the last four years. My parents feel very strongly that all of the service providers who have saved and improved my life deserve to be compensated. The money raised at this benefit will go towards past and future medical/therapy expenses. Thank you for supporting
me on my road to recovery!
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