On the 24th May I will be attempting my first (and very likely last) marathon for a cause that matters to me and my family an awful lot.

In December 2023, my niece Lily was diagnosed with Rett Syndrome.

After a year of normal development, Lily began to experience regressions in motor skills which led to an eventual and life changing diagnosis.

Despite the incredible everyday challenges and frustrations that Lily faces, she lights up any room she enters and we all pray for the day when the groundbreaking research currently underway (and in need of more funding...!) makes the breakthrough that will transform her life.

In facing her condition, Lily is blessed to have the most dedicated and loving parents she could ever hope for. I'm in awe of Amanda and Scott who have dealt with this life changing condition, and the impact it has had on all of their lives, with an unwavering determination to give Lily the best, happiest life. Her beautiful smile, which is on show so often, is a testament to this. I will be running for Lily, and her superhero parents.

Scott puts it perfectly:

"Most days I think about how much our lives will change when gene therapy arrives. It weighs heavy when old videos pop up on my phone reminding me of some of the things Lily was once able to do like feed herself and play with toys.

In an instant we went from being so excited for the future to being terrified of what it might bring. Gene therapy is the one thing that still excites us about what lies ahead.

The potential of Lily regaining any sense of independence and learning skills I’ve always taken for granted like walking and talking would be miraculous. It’s the thought of that feeling that keeps us going most days."

About Rett Syndrome & Reverse Rett

Rett syndrome is a rare genetic neurological disorder which causes multiple disabilities and medical complexities. There is currently no cure for this cruel condition, so treatment is focused on managing symptoms which vary from child to child. Some symptoms can include seizures, scoliosis and difficulties with eating, breathing, mobility, and sleep

There have been huge advancements recently with clinical trials taking place using gene therapy. This gives those effected much hope but the journey is far from over and it is important that this research and organisations like Reverse Rett can continue to be funded.

Reverse Rett is a patient advocacy and research organisation focused on accelerating treatments and a cure for Rett Syndrome to everyone affected. They have played a huge part in bringing clinical trials to the UK and their work is pivotal in supporting girls like Lily to lead free and healthy lives.