I married into a family with 4 children. 1 girl with FX, 2 boys with FX & my husband with no FX. In the family there are 33 1st cousins & 17 have FX full-mutation & 1 with premutation. We were left in charge after my husband's parents passed away. We are all in our 60s now. My inlaws left nothing in place for anyone's care. I'm a RN & had to stop working to care for everyone. Financially we couldn't do it. The oldest most profound has a diagnosis of early onset dementia at age 50. The youngest who is also profound is violent. We got him on medication and it helped a little. They roam. I spent 6 years sleeping on the couch with an alarm on the doors so when they roamed outside in the middle of the night I could get them back in the house. Finally after 6 yrs I couldn't do it any longer. My husband tried to help but because I wasn't working he had to work more hours to support everyone. We found a home for them. They love it. They come home to visit but won't stay long because they might miss bingo. 😂 We visit. Our daughters & their families visit. I guess my whole point is... Be careful what you put on your noneffected child. It's alot! It's expensive. It's hard. It brings on alot of guilt feelings. As much as you love your FX child just remember to love the other as much. Things you don't think about with these children are as they get older they age faster. Health wise there can be early onset dementia which includes all that goes with that- food textures (choking), diapers(incontinent), meds for heart conditions, prostrate issues, hypertension, hypothyroidism, ect... Will your noneffected child be able to quit work to care for an aging sibling? Changing diapers on a grown man is not so easy. Their care is 24/7. No breaks. So please please please have a plan in place. Not just a It's OK his brother or sister will do it. God bless you and your beautiful family!

My family was seen by Randi Hagerman. My father had fxtas, and next year, I turn 50. I'm now living in the UK near Liverpool. Where could I go to be tested ?

Generation of sissies. Jesus christ

Send me ur contact number I want to show you my son s test who is 6 years old Massage me on +916006081449

Is any treatment in USA for this? I have a grandson that has passed from her mom!.

Thanks for sharing your story you have helped me make my mind up

Start the experiments on the primates already. If it’s showing progress in mice, what’s the hold up on primates?

Thank you so much for this video! Very helpful information on the PGD process for fragile x carriers.

I think I'm fragile x