My name is Niamh, I haven’t long turned 18. On the 9th August 2023 I will be skydiving .Since I was a tiny baby I have always been told about MLD (Metachromatic leukodystrophy), especially with it being so close within my family. My older brother James sadly passed away through this cruel disease when he was just 2 and a half. Unfortunately we wasn’t aware of the condition James had until he had passed, the hospital and all there staff were absolutely amazing with our mum and James. When my mum fell pregnant with myself and my older sister Bethany she had to go to London hospital when she was 11weeks pregnant to have genetic testing, to be certain Bethany and I didn’t have this cruel disease after learning about it all from James. I would like to do this skydive to raise awareness for MLD ,as many people aren’t aware of this cruel disease. It affects just 1 in 100,000 which means around 3,600 babies are born with this a year.
Metachromatic leukodystrophy is a rare hereditary disorder that causes fatty substances to build up in cells, particularly in the brain, spinal cord and peripheral nerves.
The prognosis for MLD is poor. Most children within the infantile form die by age 5. My brother was unfortunately born with this condition and passed away at 2.5 years old.
Please share & donate if you can to help other families going through what my family have gone through.

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