Mark and Lisa Bushaway have told of the heartbreak of watching their two healthy daughters deteriorate into physical and mental wrecks after being struck down with childhood dementia. The couple, both 48, took Emily for tests after she began repeating herself and struggled to remember friends’ names.
The schoolgirl was just six when she was diagnosed with Niemann-Pick disease type C (NP-C) – a rare disorder affecting only around 700 people across the world. Seven years later the family suffered a second devastating blow when Emily’s younger sister Sarah showed symptoms of the same genetic condition. The girls are two of the youngest siblings ever to be diagnosed with the disease, which causes dementia as well as other devastating symptoms.
Mark and Lisa became full-time carers for their daughters as they regressed, and they have lost the ability to walk, talk and write. Lisa said: “It’s such a cruel disease, one of the worst illnesses I have ever heard of. It’s robbed us of so much. If anyone developed dementia, we expected it to be me and Mark, when we reached old age. We never expected our young girls to need constant care.” Tragically, Emily died aged just 21 and sister Sarah, now 19, has a decreased life expectancy.