A few months ago, I wrote in this column, "The worst thing about ALS is knowing that if I die, I will leave my daughters behind. The best thing about ALS is knowing that they will be okay." On my blog and on Facebook I posted a picture of the two of them, now adults, hugging. One of the reasons I know they will be fine if I die is because they have each other. About a week later, I realized that I had been insensitive to my Facebook friends who are members of families that have ALS.
I was diagnosed with ALS (Lou Gehrig's disease) in February 2007. The disease has robbed me of my ability to walk, talk, eat, hug, and take care of myself. I live in a nursing home and spend all day in a power wheelchair.
Things could be worse. Things could be a lot worse. I could be waiting for and dreading the news that one or both of my daughters have been diagnosed with the same disease. About ten percent of ALS cases are called "familial" because they are inherited through family bloodlines. These families have the sad history of loved ones through the generations dying from ALS. They have the terrifying prospect of watching their children get ALS.
My type of ALS is called "sporadic" because it attacked me without any genealogical warning. My friend, Michelle Farr, is not so fortunate. Her husband's family has the mutated gene that causes ALS. Michelle writes, "The Farr Family has fought this disease for over 12 generations with at least 50% of each generation affected by the disease. We have lost count of the affected as the number grew too large over the last 400 years. This family understands all too well the devastation that this disease can cause families and many live in fear for their family members and wonder ‘who is next’ on a daily basis."
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| Michelle Farr, her husband, and their boys |
Michelle and her husband have two cute blonde-headed boys in elementary school. The younger boy is mischievous and his older brother is more serious. They each have a 50-50 chance of getting ALS. Michelle writes, "We all work together to stay strong and support as best we can. We laugh every day and value every second of life."
Michelle has asked me to ask you to contribute to two organizations which work to find a cure for ALS: The Robert Packard Center at Johns Hopkins University
Note: The day after this article was published in the newspaper, another member of the Farr family, Dennis Myrick, died of ALS.
(This article was first published in the Asheville NC Citizen-Times newspaper and is used here by permission.)
