Rett syndrome - of which is considered largely unexplored, with elements of the condition yet to be elucidated – affects every automated system in the body, including temperature control, heart rate, breathing, and digestion. Ultimately, the brain remains functional, but the child becomes trapped in a body that is no longer responsive or receptive to the signals being fired.

In October 2023, during Rett Syndrome Awareness Month, Jayne reached out to Leyton Orient in hope they’d promote charities, Rett UK and Reverse Rett, in their monthly match day programme. Not only did they agree to include an insert to spread awareness of the genetic disorder, but the Club went the extra mile in recording Lily and the entire family’s experience during their next visit to Brisbane Road.

Lily’s story: The O’s raise awareness of rare brain disorder to affect mostly young girls

Lily’s story: The O’s raise awareness of rare brain disorder to affect mostly young girls