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Have you thought about having children as someone with FA?
The topic of having children has always been a sore subject for my husband and me.
Before we got married 8 years ago, we always envisioned having children and growing a family of our own together. Then, with the safety and concerns of my FA progression turning for the worse quicker than we thought, and making the decision that taking Skyclarys is better for my quality of life, we decided not to move forward with having kids. Also, taking Skyclarys, it does not allow it with the unknown side effects since the drug is still fairly new.
I almost feel rather guilty, but I know I have to do what is best for my husband and me, and I know I wouldn’t give the child(ren) the quality of life it deserves.
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4 Replies
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I’m 57 and have a latest form of FA. I got a daughter at 30 and a son at 37. The father got tested before. I started using a cane at 44. I am a wheelchair user now. Being a mother gave me strength and courage to face FA. I am so proud of them. I maybe had left my career sooner to be able to accomplish my role as a single mother but nothing to regret.
It is a very personal decision and depends on each one situation.
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Thank you for sharing your personal story. Was it a process for your husband to get tested?
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I definitely want to have kids someday—I hope to have two. I haven’t met my husband yet, but when I do, I know I want to build a family together. I’ve talked with many moms living with Friedreich’s ataxia, and they’ve shared incredible tips on adapting everyday parenting tasks to make them more accessible. Their experiences have given me so much confidence. I know my mobility challenges won’t stop me from giving my children a childhood filled with love, laughter, and unforgettable memories.
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I love this for you and I am glad that you found the right guidance and support to give you confidence to have children!
I just can’t imagine at my age now, almost 36, having children (FA or not lol) and dealing with fatigue and the precautions of being 40 years old in a few years.
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