‘Thank you so much as well Graham for your work on this, its very precious for all of us that good people like you make it their mission to raise awareness of the differences and nuances of our loved ones that can‘t speak for themselves.’
Hafdis (Emma-Lilja’s Mum)
Rett syndrome is a rare, severe neurological disorder that affects mostly girls. It’s usually discovered in the first two years of life, and a child’s diagnosis with Rett syndrome can feel overwhelming. Although there’s no cure, early identification and treatment may help girls and families who are affected by Rett syndrome. In the past, it was felt to be part of the Autism Spectrum Disorder. We now know that it is mostly genetically based. Boys who have Rett Syndrome usually die at birth.