Millie D’Cruz MLD sufferer

Millie’s Story

Mille age 7

Millie age 7

Millie D’Cruz 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 is unable to sit or stand, and can only move with assistance. She has lost the ability to swallow or talk, and her eyesight has deteriorated. Her quality of life has diminished intensely, and Millie has had some traumatic seizures resulting in periods of hospitalisation in order to stabilise her convulsions. Millie’s parents decided that they would like to support other parents and families affected by this dreadful condition and donated a substantial sum 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 therapeutic treatments for MLD, and have expressed a wish that we support Brains4Brain and their European consortium of scientists and clinicians working in this field.

About us

MLD Support Association UK was set up to bring hope to families in the fight to eradicate Metachromatic Leukodystrophy (MLD). Our aim is to provide support by way of shared information from people in similar circumstances who have already experienced the effects of the condition and/or any treatments available.

MLD Support Association UK

MLD Support Association UK is a
Registered Charity Number 1150542

Patrons
Professor Timothy M Cox, MD, FRCP, FMedSci
Suzi Digby (Lady Eatwell) OBE
Iain Stewart MP

Contact

MLD Support Association UK
Floor 5
Amphenol Business Complex
Thanet Way
Whitstable
CT5 3SB

Tel: 07977 440809
admin@mldsupportuk.org.uk