Prior to relocating to Australia I had the privilege of helping a family with a child having Huntington’s doing Angel flights. It is as nasty an experience as could be imagined, although there are a number of similar. To describe childhood Huntington’s as simplistically as possible, imagine having a child that progresses normally to age 6-8, and then regresses back to infancy and death. The family agreed to monthly distant travel for the medical research community to monitor and assess what was going on, as best they could. The young lady, ‘Cricket’, went from a typical child to a fully dependent being prior to death. This breakthrough, if it proves to be, is thus somewhat personal. Childhood Huntington’s is far rarer than adult, and as it cuts life so short is more insidious.
So many diseases, so little money to pay for research.
Fortunately there are still vestiges of altruism in medical research where they are not looking at making a profit from the cure, but just desiring to help.
A family member has this - being genetic it is insidious, having kids and not knowing family history … watching the person struggle with it and change. What is amazing and reassuring is the strength you see in the person themselves and the family around them. I know that isn’t universal, but I’m so glad it is in this case.
THIS article gives a little insight into how it can affect families. It’s been around a while and I remember stumbling on it when news came of it affecting my cousin.
Lisa Genova is an author and also happens to be a Neuroscientist. She wrote a book titled “Still Alice” which was made into a film - about Alzheimer’s. I didn’t enjoy the movie, because it seemed very accurate and pulled no punches - confronting, compelling, sad. Very glad I watched it though. She’s written another book titled “Inside the O’Briens” about Huntington’s and how it affects one family … Read more HERE. She describes Huntington’s as an ‘orphan disease’ because there is no motivation in ‘big Pharma’ to work on a cure …
Some promising research into treating Huntington’s Disease.
The mother-in-law of a very good mate of mine died from the disease and my mate and his wife actually moved to Adelaide for a year some decades ago as to access the testing which was only available to SA residents so as to ensure their only child did not inherit it.
