Glen Westley, a very close family friend, will be taking part in the Brighton Marathon 2026 to raise vital funds in support of Noah and his ongoing care. Glen has chosen to run in aid of Noah to help ensure he has access to the specialist support, equipment, and therapies he urgently needs.

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 severe, progressive, and life-limiting condition. NPC1 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 provision, or are subject to long waiting times, strict eligibility criteria, or limited funding. As Noah’s condition is progressive, timely access to appropriate equipment and therapies is critical to prevent deterioration, reduce pain, and preserve mobility for as long as possible.

Specialist seating, mobility equipment, feeding supports, regular physiotherapy, and home accessibility adaptations are crucial for Noah’s health and quality of life. Without charitable support, Noah would be unable to access many of these essential items, or would face significant delays that could negatively impact his wellbeing. Early intervention and consistent therapeutic input are vital to maintaining joint function, preventing secondary complications, and supporting Noah’s overall comfort.

Noah is entirely dependent on adults for mobility, communication, feeding, and emotional regulation. The specialised nature of his needs requires equipment tailored specifically to him. While statutory services provide some core support, they are unable to meet the full extent of Noah’s needs — particularly in relation to the frequency of therapy, specialist equipment beyond standard provision, and home adaptations required as his condition progresses.

Charitable funding will help bridge the gap between what Noah urgently needs and what statutory services can reasonably provide. It will enable access to essential equipment, therapies, and safe environments, ensuring that his care remains stable, responsive, and uninterrupted. This support is fundamental to preserving Noah’s comfort, dignity, and quality of life.

Please note:

7.5% of all donations made to Tree of Hope in relation to this appeal will be allocated to the charity’s general purposes to support its core operating costs.

If insufficient or surplus funds are raised, they will be used, where appropriate, to support Noah’s needs in line with Tree of Hope’s charitable objectives. If any funds cannot be applied directly for Noah’s benefit, they will be transferred for use in Tree of Hope’s general charitable activities.