My daughter, Amber was born healthy and developed like most children do until just before her second birthday. 

That was when she started to lose words she had learned and began biting herself and stuffing toys under her arms because her hands wouldn't work.

It took three years to find the right diagnosis: Rett Syndrome.

By that time Amber's motor skills had started to deteriorate. She was falling frequently and had started to struggle with irregular breathing. Seizures descended. She soon needed a feeding tube. Over the course of the next decade, Amber completely lost the ability to walk and then, to stand.

There are over fifty debilitating symptoms of Rett; too many to list here and you'd stop reading anyway. People can only take so much misery. 

That's what's exceptional about Amber though. 

Despite everything, she's a beautiful soul; determined and kind and funny. She's easy to be around despite the tremendous amount of physical care she needs.

After losing much of her childhood to seizures, breathing irregularities and crushing fatigue,  she now is in a wheelchair all day every day and has to endure all kinds of illnesses, pains and indignities just as a routine part of her every day life.

I want things to be better for Amber. That's why I started Reverse Rett when she was 14. Back then, a cure was something we hoped for that would happen in the future. 

Now, part in thanks to research Reverse Rett has helped to fund, clinical trials of disease-modifying therapies are underway. The first gene therapy trial is taking place right now in Canada, in adults like Amber, who have lived with the disease for decades.

Further gene therapy trials are due to start in children both in the US and UK within the coming year. 

At Reverse Rett, we speak to the families of children who are newly diagnosed with Rett Syndrome every day. I am so grateful to be able to tell them that these treatments are coming, that their child may not have to experience some of the difficulties that Amber has lived through.

Amber is 28 now. Her sister, Beth, is 23. They both deserve the chance to access these emerging treatments which could significantly improve their quality of life, their health, their autonomy and most critically, the length of time they are able to live.

Reverse Rett is the UK patient advocacy organisation leading the charge for treatment for everyone affected by Rett. We work to fund clinical and laboratory research projects, support UK clinical trials through the Rett Registry UK, improve UK clinical care and advocate for these innovative treatments to be available for everyone affected by Rett.

Please support us if you can.

Thank you Xx