In June 2008 my daughter experienced her first epileptic seizure. In the worst kind of nightmare nine months later I was forced to make the most difficult decision of my life, to remove 1/2 of my daughter's brain.
The dye had already been cast; there aren't many choices when it comes to Rasmussen's encephalitis (RE), an extremely rare and devastating neurological disease characterized by uncurable epilpesy and paralysis of half the body.
Unfortunately, after this radical surgery the seizures did not end and in March 2010 additional brain tissue had to be removed. The last few years have been harrowing and gut wrenching. Watching your kid's childhood plundered and robbed is not an easy thing to witness.
I am on a personal journey to do what I can to help other families impacted by RE. In 2010 I founded the RE Chidren's Project (www.rechildrens.org) to find a cure for RE. A large part of my journey centers around this community and the town of Darien. On so many levels we have been supported by friends, neighbors, the school system, and many other local organizations who have stepped forward and said we would like to help. We have been blessed.
We have made an impact, but it is not an easy task. Writing this blog will hopefully create awareness for RE as well as epilepsy and rare disease. Incurable epilepsy afflicts 1 million people in the US while rare disease impacts 25 million Americans, yet rare disease research is underfunded. It is time for epilepsy and the rare epilepsies such as rasmussen's to come out from the shadows and receive its proper due.
