This is Emily, see pictures below... Emily has Rett Syndrome. Emily used to be able to speak….now her eyes and smile speak for her. Rett Syndrome is a rare genetic disorder, affecting mainly girls, that causes multiple physical and learning difficulties. Emily developed normally until she was 18 months old. She used to say around 10 -15 words and be able to use her hands purposefully.

 Unfortunately, regression is part of Rett Syndrome and our dear friends have had to watch their little girl lose the basic skills she used to have. Emily will need 24 hour care for the rest of her life. She may lose the ability to walk, swallow and develop scoliosis, seizures along with breathing difficulties – all these are common in girls with Rett.

 Getting a diagnosis of Rett Syndrome is devastating. Seeing someone you love deteriorate is painful and every day brings a different challenge but there is light at the end of the tunnel. Rett UK have been able to help and support them all as a family through these difficult times providing advice, guidance and direction.