Remembering Ruby Leigh Pollard
A year on, we honour the little girl whose courage continues to light the path for everyone affected by Rett syndrome.
It has now been one year since the heartbreaking loss of Ruby Leigh Pollard, who died following her participation in the Neurogene gene-therapy clinical trial due to a rare, known complication of high-dose AAV9 gene therapy.
Ruby’s passing was an immeasurable tragedy for her family and for everyone touched by her story. As we approach the anniversary of her death, Ruby’s parents, Sandra and Lee, together with her sister Beth, have chosen to share her story — to celebrate her life, her spirit, and her extraordinary contribution to Rett research.
Their hope is that by sharing Ruby with the international Rett syndrome community, her light will continue to shine, inspiring compassion, progress, and remembrance for years to come.
In her mother’s words:
“On the 31st January 2017, we were blessed with the arrival of our angel. I became a Mum for the second time, my fiancé became a Dad for the first time, and my daughter became a big sister at age 19. We named her Ruby Leigh Pollard. Ruby was the heart of our family.
As the early months went by, Ruby was content and happy. To hear Ruby cry was so rare. Even during teething, it was seldom. Later on, just before her 3rd birthday, we got our diagnosis of Rett Syndrome.
Ruby was a well-known and popular member of our local community and her school. With her thick, long blonde locks, beautiful blue eyes that spoke so many words, she had amazing vocalisations and a beautiful smile. Her smile would make the most solemn people smile. In the street, on the bus, in the shops, everywhere, people often stopped to say hello and how beautiful Ruby is and that she’s brightened their day. She also had the most infectious laugh. We never allowed Rett Syndrome to define Ruby; it was just part of her make-up.
Ruby had a number of loves in life, in particular, music. We had music wherever we went, on a device or us singing. Ruby enjoyed the outdoors and nature, and, whenever possible, we accessed with her specially adapted trike which, with much dedication, we raised the funds to purchase. Ruby always noticed birds and focused on them. Ducks were a favourite, and going to feed the ducks was a regular activity she enjoyed. Ruby thrived in school. It was such a specific part of her life. With the support of therapies, she developed good eye pointing skills, switch skills, and developed instructional cue recognition. She began to weight bear and stand with little support. I must mention another love of Ruby’s; her favourite snack of Skips crisps. She could eat multiple, one after the other.
On the 5th November 2024, Ruby had gene therapy; the first child in the UK and Europe to be the recipient of Neurogene’s higher dose gene therapy. Four days after treatment, it started; an indescribable time words can never convey. Ruby fought with such strength, with many of us fighting for her. She defied certain medical opinions daily. Surrounded by love, our angel devastatingly went to sleep at 3.05am on November 20th 2024.
We would like to thank Reverse Rett for dedicating this year’s Reverse Rett Gala Film to Ruby, and helping to honour her, recognise her, and keep her memory alive.
Ruby was so happy, and loved life, she was and will always be our shining light.
Thank you for listening
Sandra, Lee, and Beth x “
We are deeply grateful to Ruby’s family for sharing her story and for allowing the wider Rett community to know and remember her.
Ruby’s courage, and her family’s strength in choosing to share her experience, will help ensure that future families benefit from the insights her participation provided. Her life and legacy will continue to influence the progress of Rett research and the development of safer, more effective treatments in the years ahead.
We dedicate this year’s Reverse Rett Gala Film to Ruby Leigh Pollard — with love, respect, and enduring gratitude.
Ruby Leigh Pollard
31 January 2017 – 20 November 2024
Forever remembered by her family, friends, and the Rett syndrome community worldwide.
On November 20th 2025, it will be the one-year anniversary of Ruby’s passing.
On that day, we invite the global Rett syndrome community to come together and light a candle in honour of Ruby — a special little girl whose courage and light continues to guide us all.