THE parents of young Millie D’Cruz-Parsley have travelled to America investigating pioneering treatment to try and combat her fatal genetic disorder.
Millie, who is just six years old, suffers from Juvenile Metachromatic Leukodystrophy which will lead to muscle wasting and weakness which will in turn mean loss of mobility and parents, Twila and Phil, are working as hard as possible.
She could also suffer loss of vision, possible convulsions, impaired swallowing and dementia, all equating to a life expectancy of no more than 10 to 15 years.
Over the past six weeks staff and pupils at her school, St Mary Magdalene Catholic Primary School have raised £3,000 for Millie to help with any equipment she might need.
Teaching assistant at the school, Lin Goddard, who works with Millie one-on-one, said: “It has come to light that there is pioneering treatment in North Carolina and this will involve a complex bone marrow transplant.
“We need to access this treatment as soon as possible although it may not be a cure it can delay the inevitable premature death Millie and her family have ahead of them.”
The family are now desperately trying to raise the necessary $600,000 or £380,000 needed for care and living costs for the six month to a year treatment course.