I’m fundraising funds for my brother Noah's Tree of Hope campaign. We’re putting together a group run to support him, and everyone is welcome, whether you’d like to join us on the day or simply make a donation.

For more information or to join the run, email alfielewis2024@gmail.com

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, or are subject to long waiting times, strict eligibility criteria, or limited funding. As Noah’s condition is progressive, it is critical that he has timely access to appropriate equipment and therapies to prevent deterioration, reduce pain, and preserve mobility for as long as possible.

Specialist seating, mobility equipment, feeding supports, regular physiotherapy, and home accessibility adjustments 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 cannot meet the full extent of Noah’s needs, particularly in relation to frequency of therapy, specialist equipment beyond standard provision, and home adaptations designed to keep him safe and supported as his condition changes.

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. This support is essential to preserving Noah’s comfort, dignity, and quality of life in the face of a complex and progressive medical condition.

Thank you for getting this far, every little helps.