This is a picture of the three people I love most in the world. Richard, my husband of over 30 years, with my two young adult sons - Geoffrey, 22 and Grant, 24.
Richard was diagnosed with Huntingtons Disease twelve years ago, an incurable neurological disease that shrinks his brain, affecting his movement, speech and mental capacity. He is currently on disability, but still able to get around independently. He has bad balance and poor coordination, some neighbors thought he was habitually drunk. His speech is slurred, and his recall isn’t as sharp as it was. But his sense of humor, easy going, uncomplaining personality and love of movies and comics is still very much intact.
More devastating to me is the fact that Huntington's is a genetic disease, and my children have a 50% chance of inheriting the Huntington's gene. Symptoms don't usually hit until middle age, and testing for the gene is a decision they can make when they are over 21. At this time, Grant and Geoffrey are with the vast majority of people at risk of carrying the HD gene who have chosen NOT to get tested. Helping to care for your Dad, watching him deteriorate and knowing that there's a 50% chance of suffering the same fate is a heavy burden.
We're hoping for a cure before Grant and Geoffrey reach middle age. But Huntington's Disease is not very well funded, since it's fairly rare. Our family participates in research trials, and there is a lot of promising research on ways to slow the progression of the disease, and find a cure.
This is a slow degenerative process for Richard, and a long worried wait as I look out for symptoms as my children get older. I can't get that shot of adrenaline and lift a car off them, or give them one of my organs. But I can help fund the research by reaching out to my friends. I know I ask every year, and you get approached for contributions to many good causes. I appreciate whatever you can donate, $5 to $5,000.
Just click on the link to donate online, or send me a check made out the Huntington's Disease Society of America.