I will be taking part in the Lake District Ultra Challenge on June 8th consisting of a continuous 100km walk with no sleep and taking in a couple of tough hills with 2500m elevation alongside other fundraisers who are affected by Rett syndrome to raise money for Reverse Rett.

On 28th December 2023, our lives changed forever when weeks of hospital stays and investigations resulted in our beautiful daughter Lily being diagnosed with Rett syndrome. We were, and will forever be completely heartbroken by this.

After developing normally, Lily gradually lost the ability to use her hands purposefully at around 14 months old. As well as being delayed in her gross motor skills, this regression triggered a lot of concern and we were unprepared for such a severe and life changing diagnosis.

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 focussed on managing symptoms which vary from child to child. Some symptoms can include seizures, scoliosis and difficulties with eating, breathing, mobility, and sleep…..the list seems endless.

Regardless of the challenges she has already faced, Lily remains the happiest and content wee girl and takes everything in her stride. She is unbelievably loved and adored and we are so blessed to have her in our lives.

Despite the overwhelming feeling of grief, we have been able to cling onto hope for the future thanks to the inspirational work of charities such as Reverse Rett who focus on accelerating treatments and a cure for Rett syndrome. This has been a big year already with two gene therapy trials being approved for the UK having started in the US and Canada last year. This was huge news for us in a time of darkness but the journey is far from over. Our goal is now to keep our beautiful wee girl as happy and healthy as possible until a treatment becomes available in the future.

There is a real feeling of helplessness when you receive such traumatic news about your child but we are both determined not to accept that ‘this will be it’ for Lily. It is heartbreaking thinking about the challenges that she will face in the future and so we will be throwing ourselves straight into fundraising for a charity that has already provided us with a great deal of support and hope in a short space of time. It is so important that they can continue to support life changing work, as well as it being a way of helping us as a family to cope with the diagnosis. Lily does not deserve what life has given her and we will always do everything in our power to do the best by her and we can’t allow the momentum to stop.

Any donations would be massively appreciated by us all in building towards a cure for this devastating disease.You cannot imagine how much this would mean to us.

Thank you so much

Scott, Amanda & Lily ❤️

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.