Ava and Ella's hair donation

Tracy shares her story of daughters Ava and Ella's hair donation for the Little Princess Trust - and their amazing fundraising for The Fragile X Society


In 2017 our son, Jack aged 2, was diagnosed with Fragile X syndrome. Until that point it was something we’d never heard of. We were sent away from genetics with a leaflet for the Fragile X Society and not much more than that.


Jack, Ava and Ella

Jack is now 4, he has a twin sister, Ella, and older sister, Ava 6. Neither is a Fragile X carrier. All three are close and look out for each other. For a long time Ava has wanted to donate her hair to the Little Princess Trust to help other children suffering from hair loss due to ill health. Both Ava and Ella have a good awareness of Fragile X and the challenges and blessings this poses for us all as a family. We suggested that Ava might want to collect sponsors for getting her hair cut. Ella decided she’d like to join in and donate her hair too. We knew many of our friends and family had never heard of Fragile X or the society so thought it would be a good opportunity to raise awareness, and money.


In January we set up a JustGiving page for the girls. In two short weeks they managed to raise £2670.

Both girls were amazing when getting their hair cut, Ava managed to donate 8 inches and Ella 9 inches. They received certificates from the Little Princess Trust.


"Luckily they were happy with their new hair styles! As a family we were delighted to be able to raise awareness of Fragile X and to fundraise for the society."



The Fragile X Society adds: "We are very grateful to Ava and Ella for donating their hair to the Little Princess Trust, and for raising such an incredible amount for the Fragile X Society, too! Well done, Ava and Ella!"

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Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England

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