In May last year, we received the heart shattering news that our beautiful daughter Layla has Rett syndrome.

We, like most others, had never heard of the condition and we had very much until that point been living in a world ignorant to this cruel and debilitating disease.

Although we had captured Layla’s symptoms early on and managed to have her seen regularly by the therapies team at 13 months old, the shock of that phone call will stay with us forever.

Rett syndrome is a hideous condition. It is rare, affecting approximately 1 in 10,000, and usually strikes little girls somewhere between their 1st and 2nd birthdays when it slowly starts taking their learned abilities globally – speech, mobility and hand use are all taken away at different stages. If that wasn’t enough it then comes with a myriad of health complications- epilepsy, breathing problems, gastrointestinal and scoliosis to name a few.

Layla had quite a severe presentation of Rett syndrome early on. Mobility was always the major concern, however, during the summer of 2022 we had noticed a host of further symptoms and unusual habits materialise. It was evident that Layla was globally delayed, and she started to display a range of behaviours such as clenching, shaking, constant mouthing her hands, biting and jerking upon waking. One thing she had learned to do was sit unsupported for limited periods; and her hand use, while not purposeful with her toys, was good for self-feeding and gripping/passing objects.

Fast forward to today, and tragically Layla’s abilities have regressed further. She can no longer sit without support, her hand stereotypies (constant tapping) now dominates and as a result she has lost full use of her hands, so just picking up a snack is impossible for her. Layla suffers epilepsy, gastrointestinal problems, reflux and hypotonia (low muscle tone) which also impacts her when she contracts a virus, getting a virus nearly always means she must have antibiotics as she suffers immensely at night with coughing.

Despite all of this, Layla remains the happiest and most delightful child we are so blessed to call our daughter. We are in absolute awe of her resilience, her determination and bravery in a world where she cannot easily tell us if she is suffering. Although Layla cannot easily move around, she is the strongest little girl we know, and she inspires us every day.

However, Rett syndrome is stealing more and more from Layla and it’s not fair. She proves to us every day that she can understand the world around her, so just imagine being Layla- locked in a body that cannot obey signals from the brain, wondering why you are unable to do the things all the other children are able to? We are fully immersed in this life now and we won't stop playing our part in the fight against Rett syndrome until it is gone.

That is why, this September, we will be taking part in the South Coast Ultra Challenge, trekking 100k over two days across the South Downs Way to raise money for Reverse Rett.

Reverse Rett provide a crucial role in the fight against Rett syndrome. Their work is all about accelerating treatments and a cure for Rett syndrome and without them this mammoth task would certainly be further in the future. We have never been closer to a cure for Rett syndrome than we are now. Gene therapy trials have been approved for the UK and will be underway in the latter part of the year, which has come after the remarkable results of the trials taking place in Canada and the US. The fact is, we know gene therapy has cured other conditions, so now it’s our turn to say good riddance to Rett syndrome.

It’s so devastating reading about another life lost to Rett syndrome, each time it hits us like a train and the world becomes a darker place. So there really is no time to lose, and we won’t stop until the fight is won.

Thank you for reading, and please donate what you can for all our Rett warriors to have a healthier future.