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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.
Easter Fun in The Sun
Thank you to Sabrina, one of our FX members, who sent in this lovely picture of her children over the Easter Holidays having some "Easter...
Apr 301 min read
Klay & Kruz Easter Fun
Thank you to Sarah for sending in these lovely photos of her two sons, Klay and Kruz, who are both living with Fragile X syndrome. Klay,...
Apr 241 min read
In Memory of Vicki
We extend our heartfelt thanks to Katrina, her family, and friends for their generous donation of £470 collected at Vicki's funeral. Our...
Apr 241 min read
Fragile X : Signs & Symptoms
Sabrina is a parent of a child with Fragile X and a medical professional. She appreciates the complexities of understanding the...
Feb 191 min read
Michael Supports Fragile X
Michael kindly shared his story of why he chose to support the Fragile X Society.
Aug 22, 20241 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 29, 20243 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...
May 23, 20241 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...
Dec 7, 20233 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...
Jul 27, 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...
Feb 15, 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
Jan 6, 20231 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 29, 20226 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
Nov 3, 20224 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.
Oct 10, 20222 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 17, 20221 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...
Aug 4, 20223 min read
Dad's FXTAS journey
Sarah has shared this story about her father's FXTAS (Fragile X-Associated Tremor/Ataxia Syndrome) journey.
Jul 6, 20225 min read
Kunal's holiday to Dubai
Kunal wanted to share with you what he most enjoyed on his recent holiday to Dubai!
May 19, 20221 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 24, 20225 min read
The kindness of strangers
One of our members shared this story about her son's employment journey
Feb 15, 20222 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 20, 20223 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 13, 20221 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
Jan 12, 20224 min read
Dennis gets his vaccine
Jo shares how son, Dennis, who has Fragile X, got on with having his Covid-19 vaccination
May 25, 20215 min read
Pedal Power: Theo's Cycling Adventures
Petra shares son Theo's cycling adventures during lockdown covering an amazing 3,278 miles!
Apr 27, 20211 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 19, 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.
Apr 6, 20212 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 23, 20215 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...
Feb 2, 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 28, 20212 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...
Jan 26, 20211 min read
A silver lining: Christian's lockdown
Isabella shares her son Christian's lockdown activities.
Aug 24, 20202 min read
Coach Deno's Lockdown 30th Birthday
Jo shares son Dennis' (Coach Deno's) 30th birthday celebrations in lockdown.
Jun 18, 20201 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 21, 20205 min read
Coach Deno and Corona Lockdown
Jo shares her experiences of lockdown with son, Dennis.
May 14, 20204 min read
Life During Lockdown
Diana shares her experiences of life during lockdown with her son Raphael, who has Fragile X.
Apr 28, 20202 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 14, 20205 min read
Birthday Celebrations in Lockdown
Birthday celebrations in Lockdown
Apr 9, 20201 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
Jan 28, 20206 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...
Nov 27, 20192 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...
Oct 10, 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....
Jun 4, 20191 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 15, 20193 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, 20194 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, 20195 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...
May 14, 20191 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...
Apr 24, 20193 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, 20153 min read
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