Darcy's MLD Terminal Diagnosis

Darcy was “normal” and healthy for the first 3 years of her life. Unexpectedly in March 2021 at age 3 Darcy was diagnosed with a very rare progressive brain disease called Metachromatic Leukodystrophy (MLD). This was discovered via a MRI scan due to Darcy suddenly struggling to walk and falling over a lot. There’s currently no cure for MLD and Darcy wasn’t eligible for any treatment due to already being symptomatic. MLD is a progressive disease and it destroys the white matter around the brain. Since Darcy was diagnosed it’s taken away her mobility, cognitive development, speech and ability to eat or drink via mouth and Darcy is now peg fed (a tube via the stomach). She underwent surgery for this in January 2022. Darcys life expectancy is 5-8 years after diagnosis. She is now age 5. Darcy is on several medications daily for pain relief and can’t do anything independently anymore and is fully none mobile.

Darcys mum Niomi had to leave her job as a Dementia Care Assistant of 5 years a few months after Darcys diagnosis to become her full time carer as she requires 24/7 care now.

I’ve set up this go fund me to provide as many precious memories with Darcy and give her the best life possible. She deserves nothing but the best! Darcy requires specialised equipment in and outside of the house daily and the NHS don’t fund everything so it will be a huge help with that too.

Thank you for all your support Darcys journey can be followed on Facebook @DarcysMetachromaticLeukodystrophyDiary and Instagram @DarcysMLDleaukodystrophydiary ❤️