On the 13th June 2026, myself and 4 other people will be raising money for Reverse Rett by doing a trio of activities within 24 hours:

• The Highland Swing, where we will be dropped from a bridge into a 40 metre free fall over the River Garry in Killiecrankie, Scotland,

• The Highland Fling Bungee Jump, a 40 metre free-fall over the River Garry in Killiecrankie, Scotland,

• and a 1,214m climb up Ben Lawers, the highest mountain in the Breadalbane region of the Scottish Highlands.

Why? Because why not?!

Let me tell you a little bit about Isla, her journey with Rett Syndrome and why Reverse Rett are so important to us. These aren’t memories I tap into very often as they are too painful, but Isla developed typically until she was around 15 months old. I vividly remember the day our lives changed forever: I was on the floor with Isla, singing and laughing, and a vacant look came over her face, her eyes rolled back into her head and she stopped breathing. She turned blue in my arms. I now know that this was the start of her regression, but having to give my own child mouth to mouth is a memory that will haunt me forever. We would go through periods where Isla would regain or learn new skills, but then she would regress again. Literally overnight. She would wake up and everything she had worked so hard for would be gone. To this day, I can still hear her beautiful voice. It would be another 2 years of unanswered questions and constant worry, until Isla received her diagnosis of Rett Syndrome on 24th June 2015. When you have a child, you make plans for your future together and you have a picture of what that will look like, but I felt as though this diagnosis took away everything I had dreamt of for Islas future and I grieved for a long, long time. But her strength and resilience amazes me more with each passing day, and I couldn’t be prouder to call her my daughter. Our future is different to how I imagined it, but she is the happiest, funniest, most awe inspiring person I have ever met.

I want a cure for Rett syndrome and for whatever treatment shows improvements to be passed for use in the UK. Reverse Rett will leave no stone unturned until a treatment is available for everyone living with Rett syndrome including my beautiful Isla. And even if gene therapy isn’t rolled out in Islas lifetime, knowing that the future looks brighter for families who will benefit further down the line, makes it worthwhile for me. 

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The UK Rett Syndrome community is at a pivotal moment at the moment with two clinical trials of gene therapies underway.

Much is required of our small, rare disease organisation at this time. At Reverse Rett, we are packing a mighty punch in accelerating disease-modifying treatments for Rett syndrome but we need your support to keep our work going.