On 15 June, 2023 our world fell apart and our lives crumbled around us as we received devastating news that no parent is ever ready to hear. Our beautiful daughter was diagnosed with Rett Syndrome at 2 years old. It is a very rare genetic neurological and developmental disorder causing severe physical and mental disability that impacts on the way the brain develops. This disorder causes a progressive loss of motor skills and language. Most babies with Rett Syndrome develop as expected for the first 12 to 18 months of life without showing any symptoms but then lose skills they previously had such as the ability to crawl, walk, communicate or use their hands. At diagnosis, we were told that there was very little help out there for us and that our beautiful little girl may not live past her teenage years. Presently there is no cure for Rett Syndrome and the current treatment is based on a holistic approach of managing symptoms.

Nothing can ever prepare you for the news that your daughter has been diagnosed with an incurable condition and both of us, along with our families, were left utterly heartbroken, devastated and terrified! We were left wondering how we were ever going to get through the future or what our future would look like. We learned very quickly that this was a destination we were ill prepared for and we had so much to learn. The shock of this news sent us into a very dark tunnel and we are all grieving the experiences Rive will never have such as hearing our baby girl speak and calling us Mummy and Daddy for the first time, seeing her take her first steps, getting invited to parties, going out meeting friends and going to play at the park etc. The simple things in life that most parents take for granted.

Rive is a happy, smiley, brave little girl, who despite her difficulties, has the ability to light up the room with her infectious smile and laughter. She is very much loved and adored just the way she is and we are fiercely protective of her. We are still stumbling through life trying our hardest to give Rive the best possible future by being proactive to keep her as healthy as we can. She is at risk of serious complications as she grows including seizures, scoliosis, anxiety and sleeping issues as well as difficulties eating, drinking and breathing. She requires multi disciplinary specialist support including occupational, speech and language and physio therapists.

Since Rive’s diagnosis we have been heavily supported as a family by Rett UK who provide professional and invaluable support to people and their families living with Rett Syndrome across the UK. We would not be where we are today without them. For that reason, we are channeling our energies into raising funds for this incredible charity.

We would be very thankful for your support and your donation, however big or small, would mean a lot to us. We hope that by raising funds we can make a vital difference to the lives of those affected by this awful syndrome.

Thank you so much for taking the time to visit our Just Giving page.