Rett syndrome is devastating for a family. Having suspected something was not quite be right, suddenly parents are told their child will be profoundly disabled, with multiple health problems including epilepsy, a curved spine, breathing problems, feeding difficulties and gut/bowel issues.

Our dear friend Giulia had to deal with all these symptoms during her 30 years of life, almost a quarter of which she spent in hospital. Rett syndrome was a massive challenge for her and her family, but throughout it all Giulia would continue to smile and that smile kept everyone going. Her smile has now gone, but Giulia will forever be in our hearts.

For people like Giulia, Rett UK is there to pick up the pieces: emotional support, high quality, accurate advice & information, advocacy, reducing isolation, empowering families, building emotional resilience and helping the person with Rett syndrome live a life worth living.

Please help us to help Rett UK and celebrate the wonderful life that was Giulia Raffaella Nesci, 4/6/93 - 25/7/23.

Thank you,

David Rogerson and Ali Sadek