Personal Stories | Fragile X | Fragile X Society

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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

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 boo...

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 ov...

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 challen...

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.

Fragile X Society

May 21, 2020
5 min

Anne Donohoe: my journey as a therapist, educator and mother

Anne's adult son, Andrew, has Fragile X Syndrome. Here, she tells us about their life in the Far East, and shares her blog and resources...

Fragile X Society

May 14, 2020
4 min

Coach Deno and Corona Lockdown

Jo shares her experiences of lockdown with son, Dennis.

Fragile X Society

Apr 28, 2020
2 min

Life During Lockdown

Diana shares her experiences of life during lockdown with her son Raphael, who has Fragile X.

Fragile X Society

Apr 14, 2020
5 min

The Hotfoot Dance Club

Julie shares the story of her keep-active dance videos featuring her son, Danny, who has Fragile X.