Well it is that time of the year when we have our annual Walk and time to create my personal page...running a little late, but here is my story of Huntington's Disease...
After first learning of Huntington's Disease back in 1965 before there were any Huntington's Disease organizations.. I was thankful that Marjorie started one in 1967....
Now many of you know, I have volunteered in the fight against Huntington's Disease since 1972... when I learned that my husband did have Huntington's disease and that meant as the father of our 4 children, all 4 of our children were at-risk of having inherited the Huntington's disease from him at a risk of 50/50 per child. That's like tossing a quarter and it landing on heads or tails, the chance of heads is 50% so that means tails chances are also 50%.
NOW, think of heads being the same as being positive for Huntington's disease, and tails being negative.. you have a 50% chance of it being either. As it turned out, so far 2 of my 4 children had Huntington's disease and have since passed away 5 and 10 years back. One of my children tested negative at age 50, when he was ready to get tested, so thankfully his children can not inherit it from him.. and we don't know of any problems in their mother's side of the family. One son is now 58 and seems fine but does not wish to be tested, that is his right as a person and I back him all the way, especially since his daughter is adopted. HOWEVER, my son that had Huntington's disease did pass the gene to his son, so my fight continues for him and so many friends around the world.
I think most of you have learned from me that Huntington's disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities once it starts the destruction of their brain, from birth to death. Children as young as 1 year and adults as old as in their 90s, and there is no cure so far.
However we have great research going on and much HOPE that the CURE or a GOOD CONTROL is very close. That is why I work with HDSA and other Huntington's disease groups. I hope you will join me again this year as many of you have in the past as we hold our 13th Team Hope Walk here in San Antonio.
Please register and help make a difference! If you cannot participate, please consider making a donation to my personal fundraising page by clicking the ‘Donate’ button at the top of this page.