Annie is an 8-year-old girl living with an exceptionally rare genetic condition involving the MAPK8IP3 gene. At the time of her diagnosis, she was just the 18th known case in the world and remains the only known person with her specific genetic alteration – making her a truly rare diamond.

Annie’s condition affects all aspects of her development, meaning everyday tasks such as sitting, standing, walking and communicating require significant support and ongoing therapy. Despite these challenges, Annie is a happy, determined little girl with the most infectious smile and a resilience that inspires everyone who meets her.

Over the years, Annie has made incredible progress through a combination of NHS support and specialist therapies. She is becoming increasingly independent in her wheelchair, allowing her to explore the world around her and take part more fully in family life. We have also travelled to Canada to access specialist therapy programmes that have made a significant difference to her development and quality of life.

Most recently, Annie underwent major double hip reconstruction surgery. While the operation was necessary to improve her long-term comfort and mobility, it has left her facing a long rehabilitation journey. She now needs to rebuild many of the physical skills she worked so hard to achieve, including sitting independently, standing with support and, we hope, eventually using her walker again.

We are raising funds to help Annie continue accessing specialist physiotherapy, speech and language therapy, rehabilitation programmes and equipment that are not always available through statutory services. Every therapy session helps Annie build strength, communication, confidence and independence.

There is no cure for Annie’s condition, but with the right support we believe she can continue to achieve things that once seemed impossible.

Thank you for supporting Annie and helping her reach her full potential.