Living with Fragile X: B’s Story

B was diagnosed with full mutation of Fragile X syndrome at the age of 6 and has shared her journey to help raise awareness and understanding.

Throughout primary and secondary school, B often felt misunderstood.  Staff had not heard of Fragile X and they didn't understand how to support her learning and emotional needs.

She found maths particularly difficult and sometimes felt excluded from activities or judged by other pupils for being given different work.

Despite these challenges, B showed great determination and wanted to be included alongside her peers.

Now at college, B studies cooking, gardening and ICT and hopes to move on to a mainstream catering course in the future. Her dream is to become a food technology teaching assistant in an SEN school. She also values the independence she has gained through travel training and now travels to college and shops independently.

B speaks openly about the frustration of Fragile X not being widely recognised or understood compared to conditions such as autism and ADHD. She hopes that one day more people will know about Fragile X and understand the experiences of those living with it.

Creativity and music have played an important role in helping B cope with challenges. She enjoys singing, songwriting and learning guitar, and has written her own album and a book called Family Disaster.

B’s story is a powerful reminder that, even with the challenges Fragile X can bring, young people can still achieve goals, develop independence and pursue their dreams.