Hope was on my mind a lot yesterday. My wife, daughter, and I took part in Team Hope Walk, the fundraising campaign of the Huntington's Disease Society of America. The event is designed to provide hope and support for those whose lives are affected by HD. People like us- or shall I say, like my son. You see, my adopted son, whom I raised since he was two, has Huntington's. The disease is a fatal genetic disease with no cure and causes the progressive breakdown of the nerve cells in the brain. It deteriorates a person's physical and mental abilities, affecting their ability to walk, to reason and to speak. Those who have the disease eventually succumb to pneumonia, heart failure or other complications, such as choking or infection. Some have described it as having ALS, Parkinson's, and Alzheimer's all simultaneously. Juvenile onset, the form of HD my son was diagnosed with, has a more rapid progression rate, with death often occurring within 10 years of JHD onset. We have become resigned to his fate and pray for God to be merciful to him during his remaining time on earth.
Prior to leaving for the walk, I tuned-in to the Ole Miss-New Mexico State football game to check out Chad Kelly- the nephew of Hall of Fame quarterback Jim Kelly and controversial quarterback for the Rebels. Uncle Jim made an appearance in the booth during the broadcast and was seen sporting a silicone wristband with the words HOPE. At first I thought it had to do with the cancer that Jim is battling. He's a fighter, and sounds like the optimist I so often wish I could be. But I then remembered his late son Hunter, who died in August of 2005 from Krabbe disease. How could I have forgotten? Reading the story the day after his death had brought me to tears. He was one of my all-time favorite stars of the gridiron and I couldn't fathom what it must feel like to lose a child like that; to watch that child get progressively worse, while there was nothing you could do to prevent it. Kelly and his wife started Hunter's Hope- a foundation whose mission is to offer education and awareness of the disease, help fund research and offer family care for those suffering from Krabbe and other Leukodystrophies.
I may not have a platform like the one that Jim Kelly has, but we will do what we can do- where we are in life. Maybe it's participating in a walk; perhaps it's a simple blog post like this one. You do what you can do and hope that one day a cure is found so that others won't have to suffer.
Although the Boise Team Hope Walk has already taken place, donations are still being accepted through December. If you feel moved to donate, I have a personal page set up on the HDSA donor drive website, which can be accessed here. Online donations are accepted and there is also a form that can be downloaded and sent in with a check. Thank you for considering a gift.