Last blog I mentioned that I was reading Saving Jessie written by Nicky Armstrong and published in the late 90s. This is truly a great book about what it is like to experience the ordeal of rasmussen’s encephalitis. Not a feel good read, but a truthful retelling of a mother’s search for answers. It really is a must read for every family that has just learned that their child has rasmussen’s. On so many levels this book connected with me, importantly it recounted the helplessness of doctors in dealing with RE and the parental decision regarding hemispherectomy surgery.
When the book took place the internet and e-mail had not been invented. The support of all of the RE families that is not routinely available could not be accessed. Nicky Armstrong was flying solo in an awful thunderstorm. The book drives home a point still relevant today, there are no drugs to treat RE. There is much to be learned from this book for parents just learning about RE. I am not aware of another book that exposes the reader to the full range of emotions and issues associated with RE. Let me know if you are aware of another book about RE.
We are moving forward fronts in the research area. We are in contact with another pre-hemi RE case in the northwest and arranging for tissue transfer. We are also collaborating with several centers about DNA sequencing to search for a genetic cause.
This Tuesday is the second annual swim-a-thon for the RE Children’s Project. Grace is fired up to swim for the cause! For more information click here.