Lily Fullbrook was born on 11th March 2020. “Jayne across the road”, as most people I speak to would know this special friend of mine as, gave birth to Lily as soon as the pandemic begun. No friends or family could visit, hospitals had so many restrictions making it hard for Jayne and Georgie. But like the true warrior and superwomen she is, Jayne took it all in her stride. As time and covid restrictions went on, they started noticing a few things with the way Lily was latching on, and the way Lily’s jaw sat. Straight away Lily was in and out of hospital having checks done as Jayne noticed Lily wasn’t putting on weight. When Lily turned 2 , Jayne and Georgie were still in and out of various hospitals as they noticed Lily was slightly behind on milestones which a 2 year old should have progressed with. I remember one evening myself and Jayne went for a walk. “Genetic testing” Jayne mentioned.

I had never heard of RETT syndrome before. I don’t think many people have, but this rare genetic neurological disorder almost exclusively affects females, can lead to severe impairments affecting nearly every aspect of a child’s life.

In the words of Jayne ” Rett syndrome has stolen my beautiful girls voice, the use of her hands, it has stolen control of her body, my baby has never said “mummy” or put her arms around my neck to cuddle me, she cant tell me when she is poorly or if something is hurting her. She is fed through a tube because no matter how much she ate she could never put on weight and was severely dehydrated. And yet Lily is the happiest, most loving, cheeky loveable human. Her beautiful eyes tell a thousand words her mouth can not”.

Straight away on Lily’s diagnosis of RETT syndrome , the charity RETT UK offered support to Lily and Lily’s family. The amount of advice, support, love, knowledge and care this charity have given is one of a kind. As you know, there are so many charities out there who work hard every single day and night to support families and individuals in need but I can’t thank RETT UK enough for being there for my amazing friend Jayne , Georgie , George and of course Lily.

I am running the London Marathon 2025 to help raise awareness of Rett Syndrome and funding support for families like Lilys when they need it the most. Personally, I want to thank RETT UK as I have seen and heard everything you have done to support Lily and her family.