Karen's Story
Karen Clark, 46, from Horsham, West Sussex, has spinocerebellar ataxia type III (SCA 3), a hereditary genetic condition which affects balance, walking, grip, speech, swallowing and ultimately breathing. It is a life-limiting condition and Karen, who was diagnosed at the age of 30, is in the later stages of the disease. Karen lives in Horsham,... Read More
Maisie's Story
Sixteen-year-old Maisie Doswell suffers from such debilitating headaches she has to spend most of the day lying flat on her bed. Maisie has the rare genetic disorder Myhre Syndrome, of which there are only thought to be 30-40 reported cases worldwide. From the age of seven she has suffered from excruciating headaches – caused by... Read More
Tayen's Story
Tayen Gilbert, seven years old, is funny, clever and crafty. She knows just how to keep her family on their toes. Tayen, has Neurofibromatosis (NF1), which causes tumours to grow along her nerves. As a result of her tumours, Tayen is fully blind and is brain damaged. She also has complex epilepsy and has hydrocephalus... Read More
