When my children were born, I had an irrational fear that something bad would happen to me, and I wouldn’t be here to take care of them. As they got older, I replaced that worry with the fear that something would happen to them. As they became more independent and self-sufficient, I saw how they could survive without me. And eventually, I knew that the chances of something bad happening to them were small so I overcame that daily fear as well.
Since my daughter’s diagnosis with Friedreich’s ataxia, both of those fears are real once again. As she loses life skills and abilities, I know that I can and will do those things for her. I will brush her hair, dry her off after her shower, and help her to get dressed. Giving her a piggyback ride or an arm to hold onto as she wobbles around have become second nature to me. I cut up her food, fold her laundry, and keep her room tidy. On occasion, I help her to apply makeup and brush her teeth.
So I realize that if something happened to me, there would be a hole in her life that would be hard to fill. There are some things that she is only comfortable letting her mama do. As a result, I find myself being extra careful. I am working out more and trying to get stronger. I strive to eat healthily and get plenty of rest. I’m doing all I can to be sure that I am here for her as long as possible — though I know it’s something that’s completely out of my control.
And of course, I am afraid of what the future holds for her health. All parents worry about these things, but FA parents get a whole new level of future gloom and doom. Each year, we face new progression, and each doctor’s appointment brings a sense of urgency to find a cure or a treatment.
Will she develop diabetes? How is her scoliosis? Has her heart condition created new symptoms? Does she need to get more exercise or more rest? Should she take different supplements and change her diet? How many times should she have physical therapy and occupational therapy each month? Should we take her to a chiropractor or holistic doctor?
It seems as if there is always more that I could be doing to combat the effects of her disease. It is overwhelming. So I do as much as I can and let the rest go. It doesn’t add to her quality of life for me to be constantly forcing new things on her. And it usually just leads to a fight. A healthy relationship with her is necessary because of how much she depends on me.
We have just arrived home from our first visit with a research facility that is doing a drug trial for FA. My daughter underwent about six hours of screening and tests to see if she is a candidate for the study. It went very well, and we are optimistic that she will get in. I can’t give details about the trial, but it is exciting to see movement forward with research in something tangible that we can be a part of. Our fingers are crossed that this research will lead to a possible treatment for FA.
I can’t imagine the feelings of the parents of patients who have gone before us, knowing that there was nothing they could do and no hope of future treatment for their children. These parents are true heroes to me. They are the ones who shouted, persisted, and advocated for all of our children. They made this happen by raising awareness for FA and other overlooked rare diseases.
They founded the Friedreich’s Ataxia Parents’ Group, Friedreich’s Ataxia Research Alliance, and rideATAXIA. They held silent auctions, whiffle ball tournaments, and charity dinners. Millions of dollars have been raised and countless hours spent so that my daughter has hope for a future. We are thankful for this hope — it’s what keeps us going each day.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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