Below are some recent e-mails we received. RE is a disease that does not discriminate based on borders or race impacting children all over the world. I do change the names, but other than that these are the e-mails received as written. One e-mail addresses what I refer to as a slow burner which is more typical of adult-onset rasmussen’s. Another discusses the difficulties of dealing with a left-sided hemispherectomy and the issue of speech transfer to the unaffected right side. If you would like to reach out to some of these folks, please send me an e-mail at swohlberg@rechildrens.com.
Our daughter, Sarah, is a rare case of this rare disease. In 2005 at age 9, she developed EPC of the tongue, with a probable diagnosis of RE. She has not had the typical rapid progression, but has shown signs of mild progression. It has been seven years now, but because of recent progression, we are trying IVIG again (no impact five years ago). Sarah is pleasantly oblivious to the disease, what progression means or even what a hemispherectomy is. With the exception of the continuous tongue seizure and about a dozen seizures a month, she is a “normal” 17 year old. The threat of severe progression weighs very heavily on me and the uncertain future is always on my mind. I realize that if she has severe progression now, that the success of a hemispherectomy has become less likely. Through your network, have you met others with this similar story? I have been unsuccessful at reaching out to other parents, but would like to make a connection to ask about doctors, procedures, successes (and I’m sure failures), emotional support etc.
My name is William Lyon. I am 60 years old and live in the Australia in the southern state of Tasmania. On November 11th 2008 my then 12 year old daughter, Megan underwent a right hemispherectomy which successfully ended over five years of searching for an alternative to this terrifying treatment. Megan has been luckier than Grace in that the surgery was an unqualified success with no lingering effects other than the usual limitations imposed by hemiparesis of her left hand side and all of the challenges that represents. Like Grace she has made a remarkable physical and mental recovery, the result of much assistance from health professionals of course, but in no small part due to her own unfailing determination to not to be beaten by this dreadful disease. All of these things are still as fresh in my memory and as they are no doubt in yours. So whilst I cant make a financial contribution, perhaps my journey and the ability articulate and relate to all of the issues confronting a family facing similar circumstances, particularly but not exclusively, in Australia, may be of use to someone who needs to talk to a person, not in their own decision making circle, but who has nevertheless experienced their dilemma first hand. It needs to be said that I am not looking for the opportunity to tell my own story over and over again, but rather to lend an ear and, if and when asked, some counsel, to others.
I am writing to ask you for more information about Rasmussen’s Encephalitis. My 11 year old niece has cortical dysplasia and has now been diagnosed with Rasmussen’s. I have been searching through websites and found yours. She lives in Argentina. I have been trying to find ways to bring her here to the US. I have contacted some hospitals but the sums are just impossible to pay for. Do you have to know if there is any help out there for international patients?
Hello my name is Betty Rogers my son was diagnosed with Rasmussen’s Encephalitis last summer he is now 12 years old and will be 13 April when we have his surgery it is his left hemisphere which controls language and speech I am more afraid because of his age. are you aware of any kids close to his age having this surgery today, I know there were a couple in the past “Kaci” and “Amber.” They have made tremendous recoveries, I read about your daughter Grace what a blessing. I have been reading on the Hemispherectomy website and the RE Children’s website over and over to help find answers…. I hope I am making the right decision for my son.
Please continue to send along your e-mails. I must admit sometimes it is lonely here in cyberspace and it is nice to know that we are reaching people and somehow making a difference.
