As I mentioned in my first blog entry, Freya’s hemispherectomy was a last resort after all the available treatements failed to control her Rasmussen’s Encephalitis (RE). For a long time we thought, surely, in the 21st century, there must be a better solution to chronic inflammation than disconnecting half a child’s brain. Unfortunately while there are a few treatments that can help, most do not control the disease in the longer term. Most RE children, like Freya, eventually have a hemispherectomy. Because of the rarity of RE there has not been any significant research into finding a non-surgical cure for this horrible disease.
Our belief that more should be done to find effective treatments for RE has led me and my sister, Deirdre, to become actively involved in the RE Children’s Project. This is a registered American charity that was established earlier this year by Seth Wohlberg. Seth is the father of 12-year old Grace, who had a complicated hemispherectomy for her RE. Seth has amazing initiative and determination, and has committed very significant personal funds, time and energy to organise a conference on RE, to be held in Salt Lake City from 6-8 October this year. Over 50 of the world’s leading neurologists, immunologists and other experts will be attending the conference, which will identify ‘next steps’ for research into RE. Deirdre will travel to the conference in October but it is too early in Freya’s recovery for me to go, as I originally planned.
The RE Children’s Project focuses on raising funds for high priority RE research. There is new evidence than many forms of uncontrollable epilepsy, not just RE, are caused by autoimmune-based inflammation. Therefore, it is hoped that any breakthroughs in treating RE, which is a rare and severe form of autoimmune epilepsy, may help with other more common epilepsies.
The website for the RE Children’s Project is www.rechildrens.com . As an alternative to any gifts for Freya, perhaps you might think about making a small donation to the RE Children’s Project. Details of how to donate are on the website.
Thanks Carolyn - will check out the site. Hope Freya is continuing to make small steps in her recovery, and is feeling much better than she did just a week ago. Laughed at her charming the therapists - imagine she would have worked her magic on the GG if she'd been awake!! Hope you, Anthony & Ella are holding up ok too. Helen
ReplyDeleteHi Freya!
ReplyDeleteI think it's sad that there's no way to cure epilepsy with out surgery, hopefully in the future it will be easier for people like you.
cant wait to see you on Monday or Tuesday!
<3 Edie
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