Millie D’Cruz Parsley celebrated her birthday in April 2010 as a normal, healthy six-year-old child. She enjoyed playing with her dolls, playing on her scooter, and generally ‘messing around’ with her schoolmates and siblings. Within a couple of months, her inability to keep pace with her peers, alongside some issues with her balance, had been noticed, and her condition was eventually diagnosed as Metachromatic Leukodystrophy (Juvenile onset).
Her family and friends, tried desperately to raise enough money to help pay for a bone marrow transplant which was possibly available in the United States of America; but the rapid onset, alongside her rare tissue type, meant that Millie would not be a suitable candidate. Other trial treatments were considered, but Millie’s condition was rapidly deteriorating, and the potential for any medical intervention seemed impossible.
By the age of eight, Millie was unable to sit or stand, and could only move with assistance. She lost the ability to swallow or talk, and her eyesight deteriorated. Her quality of life diminished significantly, and Millie had some traumatic seizures resulting in periods of hospitalisation in order to stabilise her convulsions. Millie is now 14, and still looked after at home by her parents.
In 2012, Millie’s parents decided that they would like to support other parents and families affected by this dreadful condition and made a financial donation in order for the MLD Support Association UK to be set up. This is seen as a legacy in honour of Millie, and the suffering which both she and her family face on a daily basis. They are also keen that the charity will support the funding of research into treatments for MLD, and have expressed a wish that we support Brains4Brain and their European consortium of scientists and clinicians working in this field.