*In Memory of Raif: Completing 100k for Chestnut Tree House*

On Saturday 23rd May 2026, we, supported by family and friends, will undertake an unforgettable journey, completing a 100k ultra challenge from Richmond to Brighton in support of Chestnut Tree House. This heartfelt endeavor is dedicated to the loving memory of our precious baby boy, Raif, who touched our lives for 13 months.

Raif's short life was marked by bravery and resilience. Born on October 30th 2022, he was diagnosed with the very rare genetic condition COL4A1. This meant he did not meet his milestones, had terrifying seizures and had struggles with feeding and breathing. Through Raif’s life he had 7 hospital admissions, 4 emergency transfers, 3 of which were to intensive care and 2 of those on life support. Each stay in hospital came with more bad news, more medicines and steadily more medical equipment to operate at home.

Despite the never ending difficulties, we cherished every moment with him, and his fight and courage continues to inspire us.

Chestnut Tree House came into Raif’s life when he was 8 months old. At this time we were barely sleeping, getting used to tube feeding and facing some devastating appointments where we would be told that Raif’s condition was severely life limiting.

After so much time divided between hospital and home, Chestnut offered a place where our family could be together. The team at Chestnut welcomed us in, were a source of support and a place where we could stay and use all the facilities as a family. At Chestnut we were able to sleep and catch a breath, knowing that our family were together and in safe hands.

When the time came for end of life care, Chestnut Tree House ensured we could make memories together for those last weeks, emotionally supported us to ensure we could soak in every last cuddle with Raif, as well as providing resources to help our little girl understand death at such a young age.

The charity's dedication to providing respite, end-of-life care, and bereavement support is truly remarkable. We are determined to give back to this incredible organisation, ensuring that other families can benefit from the care and compassion that we received.

By completing this 100k challenge, we aim to raise vital funds for Chestnut Tree House. Every donation will help provide life-changing support to families navigating the complexities of caring for a seriously ill child. Your contribution will bring hope, comfort, and joy to those who need it most.

*Event Details*

- Date: May 23rd, 2026

- Route: Richmond to Brighton

- Finish Line: Brighton Racecourse

- Patrick will be running the 100k alongside Rich Ellis, Greg Shaw, Dan Rowland, Alex Oprey, Joe Warren and Jonny Hartley.

- Lynsey will be walking the 100k alongside her dad, Mick Burkinshaw.

- https://www.ultrachallenge.com/london-2-brighton-challenge/

*Why We Need Your Support*

Chestnut Tree House relies on donations to continue providing essential care and support to families. The cost of running the charity for just one night is £16,240. Your donation will help ensure that families like ours can receive the care and support they need.

*Join Us*

Please join us on our journey to support Chestnut Tree House. Every donation, share, and message of support will bring us closer to our goal. Together, we can make a difference in the lives of families who need it most.