Having a baby with friedreich ataxia

Hi I’m 26 years old and live with friedreich ataxia, i am still able to walking using a Walker. I’m in a committed long term relationship and I’m starting to think about babies! I think my question is amid at ladies in their mid 20s to early 30s who have Ataixa who’s had a baby if they wouldn’t mind sharing their experiences? Or partners with tips and tricks to support.
I have a lot of worried about falling while pregnant/ with young baby in arms? will my body cope? Is it safer to wait till I’m in a wheelchair? Is there extra support for people with disabilities while pregnant/ have a young baby?
Thank you all in advance.

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I’m sorry you haven’t gotten any responses on this yet. I suspect you will wind up needing to make decisions for yourself. That said, being pregnant will ultimately throw off your center of gravity, and there will come a time where you won’t be able to see your feet. Some of that continues after the baby is born as babies need to be in arms a lot, and now will require the use of at least one of your arms. If you’re already using a walker, babywearing might be your best friend, as you can do hands free with that. Actually, it would work really well for wheelchair use as well.

I have a friend with a disability who found herself needing to use a wheelchair while pregnant and in the months after. It wound up being the safest option for both her and the baby. My suggestion would be to use whatever mobility aid you find works best for you at a given moment.

Sharon from ModSupport

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:slightly_smiling_face:Hi…it sounds as though you’re doing great with exercise and therapy…it should stand you in good stead. And having a supportive partner makes a big difference.
Personally, I only know of one person who had a baby after being diagnosed with FA. This person had been diagnosed from childhood, so was in a wheelchair early on…she had a good support system in place, and her son in is now in his 20s with a child of his own🙂

:thinking: If you’d been to any AtaxiaUK Conferences, you might have been able to chat to others coping with FA, who had gone on to have children, and of course other Ataxians who’d had children. I have children myself, but ataxia wasn’t diagnosed until after menopause.

:slightly_smiling_face: If you’d like to ask others coping with FA, there are specific support groups on Facebook.

:thinking: You may not already have thought about passing FA on, but the same consideration should be given for any type of ataxia, or genetic condition. Eggs can be tested, and the procedure is similar to IVF.

:slightly_smiling_face: Best wishes whatever you decide.


I don’t have any answers to your questions. Pregnancy is such a personal decision when it comes to having ataxia. I will share my experience with you, though. I was diagnosed with SCA when I was 29 years old my daughter was 3 at the time. My daughter is my greatest gift and my biggest helper :).

I did have symptoms, which made me question, “how can I ever have another child while I have ataxia?” “What if I drop my baby” The thoughts became overwhelming. I was just so scared. Well, I never did have a second child. Now, I am 45 years old. While my ataxia has progressed over the years, it was never THAT BAD, ya know. My biggest regret in life is that I never gave my daughter a sibling. Only you can make this decision. I pray that things work out for you, whatever you do decide. I think that raising a child, though, while you do have ataxia, it is really important to have help and support. Good luck to you.


My daughter has SCA2 Ataxia. She went through IVF so as not to pass the disease onto her children.
No probs with pregnancy :slight_smile:
Two kids without Ataxia


Thank you so much for all your replies, they have all be so helpful, sorry I haven’t responded staight away. My post was a vent in a way, to see what other people’s personal experiences with ataxia and having a baby. Now me and my partner have a plan, we are going to London next weekend to see an ataxia specialist (for the first time!) So there we are going to ask the steps in having a baby safely…. I will give you another update when I know more.
Again thank you all so much.

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I’m late to the party as usual, but I have had acquired ataxia for 7 years and I have a 4 year old daughter. It was totally a shock as I fell, but still went to PT that day. They thought I fractured my hip and sent me to the hospital. I did an x-ray and no fracture thankfully, but my urine test showed that I was pregnant.

I was and am walker dependent. I had an odd symptom where my palms were always sweaty so I put washcloths on my handles. I also put ankle weights on my walker legs to feel safer. I lived in a small town and no obgyn would accept me so my husband would drive 6 hours round trip for my appointments! I ended up being life flighted to Phoenix (5 hours away) and gave birth there. I was sick quite a bit because of a bad gallbladder that got removed 2 days after giving birth. :roll_eyes:

When we got home we had some things that we needed to get settled. Example: walking around in the dark while it’s the middle of the night to make a bottle was not an option for me. I couldn’t breastfeed due to my medication. My husband would bring me our little girl because I couldn’t hold her while walking. Simple things that I never thought about before were a part of my everyday life.

The first months were hard. Disabled mom not being able to safely hold my child while standing. We learned certain skills where I could lean up something to hold her safely. First time parents with mom having this hideous condition.

Now our girl is 4. She helps in any way she can. We taught her quickly that mom can’t walk well. She likes to ride on my lap in my scooter. Every morning she says “ride with mama!” when I wake her up and we ride my stair lift down.

There’s many times that my husband and I talk about having another. We moved across the country and I now go to the ataxia clinic at University of Michigan. I feel very well taken care of and have no worries about people not knowing my condition.

If you have any questions or anything please let me know! Good luck to you. :kissing_heart:

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