Governor Greg Abbott declared Saturday Friedreich’s Ataxia Day in Texas. Never heard of it? Most people haven’t. It is a very rare, very debilitating neurological disease. Just 5,000 Americans suffer from it, including Cedar Park’s Kendall Harvey. She is a young mom determined to live out her future, see her son grow and her disease defeated.
A multi-sport athlete and cheerleader in high school, Kendall first noticed the symptoms coming on a few years ago during dance lessons in preparation for her wedding. She recalls, “I kind of chalked it up as aging. I’m just not in as good a shape as I used to be. As the years went on I noticed my balance got worse, I was stumbling more than I used to.”
Friedreich’s Ataxia is marked by loss of balance, slurred speech, and eventually a shortened life. After testing for MS and almost everything else, Kendall took the extensive and expensive blood tests that gave her the bad news. She says, “The first time I ever heard of Friedreich’s Ataxia was the day I was diagnosed with it. It came as quite a shock.”
Ataxia comes from two parents who both carry the rare, recessive gene. In that case their offspring has a one in four chance to develop Ataxia. Kendall’s older brother does not have it, she does. Her six month old son Brooks is now a carrier himself. Kendall spends much of her time now caring for Brooks, working on charity events to raise money for a cure to her disease, and finding new ways to exercise. She cannot go down stairs, nor run anymore, so she uses a trike, “It’s a recumbent tricycle so I don’t have to focus or use energy to balance. So I can just ride. It is very liberating.”
Kendall has raised tens of thousands of dollars through her charity events for the Friedreich’s Ataxia Research Alliance, a satisfaction as she faces an uncertain future. Kendall reflects, “It’s kind of bittersweet living in the moment. While I do get frustrated on tough days when I stumble or slur my speech, it’s hard to think, man, these are the good days. What’s the future going to look like?” Then she realizes the future is right there, in six month old Brooks.
Brooks will turn seven months soon. He will always be a carrier. Should he marry someone with the Ataxia gene, their children have a one in four chance of getting the disease. There is no cure or treatment. To learn more about Kendall’s case, the clinical trials and donations, you can go to www.TeamKendall.org. You can also learn more by reaching the Friedreich’s Ataxia Research Alliance at www.curefa.org.