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Hi, my name is steperci!

steperci Community member Posts: 1 Listener
Hi I’m the dad to 2 kids that have fragile x syndrome. Jack 15 and Grace 19. It can be pretty challenging. Anyone else on here got kids that have fragile X?


  • chiarieds
    chiarieds Community member Posts: 16,133 Disability Gamechanger
    Hi @steperci - & welcome to the community. We have had other parents with children with Fragile X on here before, so it may be worth searching for this to see if any are still active. I'm unsure as to what device you may be using, but on my desktop computer the search option is identified by a magnifying glass at the top of the page, which you would click on to then type in 'Fragile X.'
    As well as I'm sure receiving support here, I wonder if you've come across this website:https://www.fragilex.org.uk/

  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Hello @steperci and a warm welcome to our community, how are you and your family today?

    I'm not overly familiar with Fragile X syndrome, however just had a little read up on it. I can begin to understand some of the challenges you face, is there anything in particular we can help with? Do you feel you have enough support?

    I can see we recently had another new member @alijacob26 who has 2 children with Fragile X also. Here is their thread should you wish to reply to them. You're more than welcome to start a thread in our Children, parents, and families category to reach out to others too, and share stories. 

    Wishing you all the very best. Take care and happy Sunday!
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  • Ada
    Ada Scope Member Posts: 15,220 Disability Gamechanger
    I am sorry I know nothing about it. 
    I did want to say hello and wish you the best. You will find support here and many new friendships. 
    Whilst your seeking like for like support but also need some light relief maybe you will come to the coffee lounge for a chat chuckle and silly games. 
    Hope to see you there x
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