Thank you for your continued support over the years to help Darcy enjoy her life at the best of her ability. 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. 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. It needs to be diagnosed and treated before symptoms start. MLD has not yet been adding into the newborn screening test. Since Darcy was diagnosed it’s taken away her full mobility - resulting in scoliosis of her spine, it’s taken away her cognitive development, it’s taken away her speech and she is nonverbal now, it’s taken away her ability to eat or drink via mouth and she is now peg fed (a tube via the stomach). She underwent surgery for this in January 2022. Darcy has also been registered as visually impaired but we strongly believe she still has some vision! Darcys life expectancy is 5-8 years after diagnosis. She is now 8. Darcy is on multiple medications daily for pain relief to keep her comfortable and happy. Sadly she’s lost all independence and now requires 24/7 care.

Darcys mum, Niomi who was just 22 years old when Darcy was diagnosed had to leave her job as a Dementia Care Assistant of 6 years a few months after Darcys diagnosis to become her full time carer as she gradually declined.

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 sadly don’t fund everything. Your generosity has helped Darcy tremendously over the past few years and continuously does so. MLD might have taken a lot from Darcy but her smile and love for life continues. She still has a sense of humour and loves exploring.

Thank you again for all your support. Darcys journey and life can be followed and supported on her social media platforms

Facebook @DarcysMetachromaticLeukodystrophyDiary and Instagram @DarcysMLDleaukodystrophydiary ❤️