Freya's Story
Freya has written a lovely story in her own words to help raise awareness about people with learning disabilities. I’m not less than you....
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Personal Stories
No information leaflet can ever describe what life with Fragile X is like. We are proud to share personal stories from individuals with Fragile X, their families and loved ones about their experiences, including the ups and the downs.
We strive 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.
- Jul 27
- 1 min
Kunal's Days Out
Kunal has kindly shared some of the days out he has been on recently and we have enjoyed reading and seeing what a great time he had. My...
- Feb 15
- 1 min
Kunal's Activities
Kunal wanted to share with you all some of the fun activities he enjoys with his friends at Pholk Care My name is Kunal Panchal and I...
- Jan 6
- 1 min
Emily to represent Great Britain in Special Olympics 2023
Louise Clarke shares the exciting news that daughter Emily has been selected to represent Great Britain in tennis at the Special Olympics
- Nov 29, 2022
- 6 min
Where are they now? with the Irvines
In this first instalment of our new series, Sally and Jim Irvine share this family update about sons Jamie (40) and Stephen (35)
- Nov 3, 2022
- 4 min
Coping with the death of HM Queen Elizabeth II
Jo has shared this story of how her son, Dennis (known as Coach Deno) has coped with the death of Her Late Majesty Queen Elizabeth II
- Oct 10, 2022
- 2 min
International Fragile X Awareness Day 2022: 10 October
Today is International Fragile X Awareness Day. But what is life really like with Fragile X? Watch our special family stories to find out.
- Aug 17, 2022
- 1 min
Our family trip to the NFXF Conference, San Diego
Katrina sent us this update and pictures from her family's summer trip to the National Fragile X Foundation (NFXF) conference in San Diego.
- Aug 17, 2022
- 1 min
Five simple tips for hot weather
Laura has shared these great tips which helped her child cope with the recent hot weather.
- Aug 4, 2022
- 3 min
Fragile X and FXTAS: my family's story
Emma has shared with us her family's story of Fragile X and FXTAS (Fragile X-Associated Tremor/Ataxia Syndrome) Emma tells us, "I had...
- Jul 6, 2022
- 5 min
Dad's FXTAS journey
Sarah has shared this story about her father's FXTAS (Fragile X-Associated Tremor/Ataxia Syndrome) journey.
- May 19, 2022
- 1 min
Kunal's holiday to Dubai
Kunal wanted to share with you what he most enjoyed on his recent holiday to Dubai!
- Feb 24, 2022
- 5 min
The Neuro-GD Study: with Fragile X Coach Deno
Jo shares her story of son Dennis' participation in the Neuro-GD Study run by Dr Andy Stanfield and colleagues at the Patrick Wild Centre
- Feb 15, 2022
- 2 min
The kindness of strangers
One of our members shared this story about her son's employment journey
- Jan 20, 2022
- 3 min
Fraud
One of our members highlights a problem their family has experienced, in the hope it may prevent something similar happening to yours.
- Jan 13, 2022
- 1 min
Kunal's favourite activities
Kunal wanted to share with you some of the things he's enjoyed doing over the last few months.
- Jan 12, 2022
- 4 min
Coach Deno loses his Grandma Mini
Jo shares how her son, Dennis (known as Coach Deno) has coped with losing his beloved Grandma Mini
- May 25, 2021
- 5 min
Dennis gets his vaccine
Jo shares how son, Dennis, who has Fragile X, got on with having his Covid-19 vaccination
- Apr 27, 2021
- 1 min
Pedal Power: Theo's Cycling Adventures
Petra shares son Theo's cycling adventures during lockdown covering an amazing 3,278 miles!
- Apr 19, 2021
- 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
- Apr 6, 2021
- 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.
- Feb 23, 2021
- 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
- Feb 2, 2021
- 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...
- Jan 28, 2021
- 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...
- Jan 26, 2021
- 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...
- Aug 24, 2020
- 2 min
A silver lining: Christian's lockdown
Isabella shares her son Christian's lockdown activities.
- Jun 18, 2020
- 1 min
Coach Deno's Lockdown 30th Birthday
Jo shares son Dennis' (Coach Deno's) 30th birthday celebrations in lockdown.
- 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...
- May 14, 2020
- 4 min
Coach Deno and Corona Lockdown
Jo shares her experiences of lockdown with son, Dennis.
- Apr 28, 2020
- 2 min
Life During Lockdown
Diana shares her experiences of life during lockdown with her son Raphael, who has Fragile X.
- 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.
- Apr 9, 2020
- 1 min
Birthday Celebrations in Lockdown
Birthday celebrations in Lockdown
- Jan 28, 2020
- 6 min
Growing up with Fragile X: one family's story
Heather shares her experiences of growing up with brother James, who has Fragile X
- Nov 27, 2019
- 2 min
Fragile X Podcasts
Podcasts are a fantastic way to get informed on the go. We are delighted to be able to signpost you to some fantastic Fragile X-related...
- Oct 10, 2019
- 1 min
Fragile Not Broken: A Documentary
Phoebe created this wonderful documentary about her family's Fragile X diagnosis story. Thank you so much Phoebe for sharing this...
- Jun 4, 2019
- 1 min
Paula's Message for Healthcare Professionals
In a recent article in the Archives of Disease in Childhood (ADC), Paula shared her experiences of growing up with Fragile X Syndrome....
- May 15, 2019
- 3 min
My sister’s “ordinary life” By Saba Salman
My sister Raana recently made a film about her everyday life that was shown to an audience of 130 people at a conference in London. This...
- May 14, 2019
- 4 min
#fragilextraveller: My Amazing Holiday to Australia
Hello to all you lovely people, I’m Matt #fragilextraveller and with the help of my Mum & Nan I have been on an amazing holiday to...
- May 14, 2019
- 5 min
"Bye, Jean!"
What I am going to write - what has happened – has made me the person I am today. In this piece jean reflects on her children growing up...
- May 14, 2019
- 1 min
"I go home feeling better about everything": How Kunal's art group helps.
In this piece Kunal shares about how his local art group helps him I like Artability - it helps me to enjoy spending time with my friends...
- Apr 24, 2019
- 3 min
Our Story, and how the Society has helped us.
A mother writes about her daughter’s journey from childhood diagnosis, through school and college and into adult life and employment, and...
- May 1, 2015
- 3 min
25 Years On: Sarah and Lucie's Story
Written by Sarah and Lucie 25 Years Ago Twenty five years ago Fragile X was not in our orbit but it entered our world in the summer of...
- May 1, 2015
- 6 min
25 Years On: Kerry's Story
Written by Kerry Oh those early days… When I first got my eldest boy George, then 2, diagnosed with Fragile X Syndrome, I had no clue...
- May 1, 2015
- 4 min
25 Years On: Paula's Family Story
Written by Paula Let’s go right back to the beginning for my little family. I shall start off by introducing ourselves. I am Paula...
- May 1, 2015
- 2 min
25 Years On: Supporting Siblings
Written by Kathryn 1990 Our father was seventy-four at the time and looking after two sons, Ian and Howard (aged forty-nine and forty),...
- May 1, 2015
- 4 min
25 Years On: I Love My Job!
Written by Hannah and Jo There’s something very humbling about setting about writing a story that comes from deep within the heart; and...
- May 1, 2015
- 2 min
25 Years On: Janine's Family Story
Written by Janine 1990 Geoffrey had been just diagnosed. In the days before the internet, let alone Facebook, I knew no one who had a...
- May 1, 2015
- 2 min
25 Years On: Martin's First Flat
Written by Jim Martin, our youngest child, was diagnosed in Edinburgh with Fragile X Syndrome when he was nine years old, but it was...
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