Glenn's story

Myself and my brother Rob are completing the 100001 darts challenge on Friday 6th March. As very very amateur darts players this is likely to take roughly 12 hours of non stop darts, no breaks, just non stop darts and lots of pathetic averages of 26. This is all for an incredibly worthy cause, a family member who is facing a long term battle. With the help and support of you incredible people, Noah's fight gets stronger and stronger.

Noah's diagnosis of Niemann-Pick Disease Type C1 (NPC1) places him among a very small number of children in the UK living with this ultra-rare, progressive and life-limiting condition. NPC1 is a severe neurodegenerative disorder that affects Noah's neurological, physical and cognitive functioning and requires specialist interventions, equipment and support that go far beyond what statutory services are able to provide.

Many of the essential resources that Noah needs to remain safe, comfortable and engaged in daily life are either not available through the NHS or local authority, or are subject to long waiting times. As Noah's condition is progressive and incurable, it is critical that he has timely access to appropriate equipment and therapies to delay deterioration, reduce pain and preserve mobility for as long as possible.

Noah (lovingly known as Tinies) is entirely dependent on adults for mobility, communication, feeding and emotional regulation. The specialised nature of his needs requires bespoke equipment tailored specifically to him.

Charitable funding will bridge the gap between what Noah urgently requires and what statutory services can reasonably provide. It will allow him to access the equipment, therapies, and safe environments he needs now and in the future to ensure that his care remains stable and uninterrupted.