Sunday, May 4, 2014

Evan and Tuberous Sclerosis

Evan has been struggling with epilepsy and tuberous sclerosis complex (TSC) his entire life. He was born with four brain tumors and began having seizures as a one-month-old and by the time he was four years old, he was having 300-400 seizures a month. At this young age he underwent brain surgery to remove three tumors and control his epilepsy. He left the hospital seizure-free. He had freedom from seizures for almost two years but the seizures have now returned, less frequently than before surgery but of dramatically increased severity. Evan has three to four seizures a month, but because they last several minutes medical intervention is always necessary to stop his seizures.

Families often say TSC is like walking in a mine field -- you never know what to expect next. In addition to the challenges of seizures, Evan also has multiple kidney tumors. One of them is almost 3 cm. and is being watched closely. There is a medication that can shrink this type of tumor and it will be interesting to see if Evan will be able to try this medicine with minimal side effects.

As his family and doctors actively pursue new treatments for Evan, he has learned about the importance of research and has even participated in research studies. This unique experience has led him to the desire to raise money for TSC research.

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