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.

Aug 221 min read

Michael Supports Fragile X

Michael kindly shared his story of why he chose to support the Fragile X Society.

May 293 min read

Dennis at the Cinema - Sheffield

Dennis is passionate about movies and coaching football. For him watching movie in cinema, TV, computer, laptop, IPad and phone are...

May 231 min read

Ryan’s Driving Test

Ryan’s parents kindly shared his amazing achievement with us and we wanted to share it with you all. "Ryan is 24 years old and has a full...

Dec 7, 20233 min read

Isabel's Story

Having done the Great South Run once before, I was keen to do it again and this time raise some money for charity. Which charity was...

Jul 27, 20231 min read

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....

Jul 27, 20231 min read

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, 20231 min read

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, 20231 min read

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, 20226 min read

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, 20224 min read

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, 20222 min read

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, 20221 min read

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, 20221 min read

Five simple tips for hot weather

Laura has shared these great tips which helped her child cope with the recent hot weather.

Aug 4, 20223 min read

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, 20225 min read

Dad's FXTAS journey

Sarah has shared this story about her father's FXTAS (Fragile X-Associated Tremor/Ataxia Syndrome) journey.

May 19, 20221 min read

Kunal's holiday to Dubai

Kunal wanted to share with you what he most enjoyed on his recent holiday to Dubai!

Feb 24, 20225 min read

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, 20222 min read

The kindness of strangers

One of our members shared this story about her son's employment journey

Jan 20, 20223 min read

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, 20221 min read

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, 20224 min read

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, 20215 min read

Dennis gets his vaccine

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

Apr 27, 20211 min read

Pedal Power: Theo's Cycling Adventures

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

Apr 19, 20212 min read

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, 20212 min read

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, 20215 min read

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, 20212 min read

'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, 20212 min read

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, 20211 min read

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, 20202 min read

A silver lining: Christian's lockdown

Isabella shares her son Christian's lockdown activities.

Jun 18, 20201 min read

Coach Deno's Lockdown 30th Birthday

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

May 21, 20205 min read

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, 20204 min read

Coach Deno and Corona Lockdown

Jo shares her experiences of lockdown with son, Dennis.

Apr 28, 20202 min read

Life During Lockdown

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

Apr 14, 20205 min read

The Hotfoot Dance Club

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

Apr 9, 20201 min read

Birthday Celebrations in Lockdown

Birthday celebrations in Lockdown

Jan 28, 20206 min read

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, 20192 min read

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, 20191 min read

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, 20191 min read

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, 20193 min read

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, 20194 min read

#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, 20195 min read

"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, 20191 min read

"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, 20193 min read

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, 20153 min read

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, 20156 min read

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, 20154 min read

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, 20152 min read

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, 20154 min read

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...

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Personal Stories

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