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Real Fragile X Stories

No information leaflet can ever describe what life with Fragile X will be like. We are proud to share stories from individuals with Fragile X, their families and loved ones about their experiences, including the ups and the downs.

We are always wanting to share a diverse range of experiences and would love to hear your story. If you are interested in sharing a piece, then please do contact us!

Fragile X Society

May 25
5 min

Dennis gets his vaccine

Jo shares how son, Dennis, who has Fragile X, got on with having his Covid-19 vaccination

Fragile X Society

Apr 27
1 min

Pedal Power: Theo's Cycling Adventures

Petra shares son Theo's cycling adventures during lockdown covering an amazing 3,278 miles!

Fragile X Society

Apr 19
2 min

Melissa's March: 310,000 steps for Fragile X

Melissa shares son Hugo's diagnosis journey and her challenge of 10,000 steps each day of March 2021 to raise funds & awareness of Fragile X

Fragile X Society

Apr 6
2 min

Nip in the Bud video opportunity

A video request from Olivia Hird, Documentary Filmmaker for Nip in the Bud, which may be of interest to some of our Dads/male carers.

Fragile X Society

Feb 23
5 min

A sibling's viewpoint: Anne and Nick's story

Anne shares her story of growing up with her brother Nick, who has Fragile X Syndrome

Fragile X Society

Feb 2
2 min

'The best book I have read on Fragile X Syndrome'

A review of 'Mental Essence' by Emilie Weight from Jonathan Herring, Honorary Advisor to The Fragile X Society 'This book is the best...

Fragile X Society

Jan 28
2 min

Kunal Keeping Busy

Kunal’s story which was written before the current lockdown Kunal would like to share with you all what has been happening in his life...

Fragile X Society

Jan 26
1 min

Lola's Lockdown

Claire shared these lovely photos of her daughter Lola "Here we are again in lockdown number 3! We have found it a bit more of a...

Fragile X Society

Aug 24, 2020
2 min

A silver lining: Christian's lockdown

Isabella shares her son Christian's lockdown activities.

Fragile X Society

Jun 18, 2020
1 min

Coach Deno's Lockdown 30th Birthday

Jo shares son Dennis' (Coach Deno's) 30th birthday celebrations in lockdown.