Date published: 13 August 2024 by Katie Inglis

Ebeneza, 18, was diagnosed with Sickle Cell Disease as a baby; a disorder which distorts the shape of blood cells leading to fatigue, extreme pain and frequent infections. As a result, he spent years of his childhood in and out of hospital.

Aged 13, he underwent a Bone Marrow Transplant, however this has since failed, and Ebeneza underwent another transplant in March 2024. This is his only hope of a cure.

A transplant like this requires a total of 14 weeks isolation. Six weeks in hospital pre-op, followed by followed by a further eight weeks rest and isolation at home. Home for Ebeneza is a flat in North West London, shared with brother Emmanuel, eight, and mum, Elizabeth, who also suffers from Sickle Cell Disease. Due to the severity of her illness, Elizabeth is often in hospital and struggles with household tasks and home improvements. As a result, Ebeneza’s room was not a suitable environment for the long stretch of recovery ahead of him.

Rainbow Trust Family Support Worker, Angie, has been supporting the family for six years, providing a range of practical and emotional support, including: transport support to hospital appointments; hospital support; and helping the family with applications for housing and benefits.

With news of the transplant, and the subsequent isolation period, Rainbow Trust’s corporate partner Taylor Wimpey enthusiastically agreed to take on the project.

Taylor Wimpey Project Director, Antonis Pazourou, led the renovation, with significant support from colleagues Justine Webber, Jackie Whitaker, Stephen Beggins, Luke Clayton Claire Lary.

Over the course of three days in June, a team from Taylor Wimpey transformed the bedroom, replacing the flooring, giving it a fresh lick of paint and some much-needed decoration. While the bedroom was the focus of renovation, the team surpassed the families’ expectations by redecorating the hallway and small living space with their spare materials and time.

Amtico, Designer Contracts, EcoGrass, Signature Buildings, Ikea and Amazon all helped to support this project, providing the items and funds necessary for its completion.

Life has not been easy for Ebeneza. His illness has caused him to miss large chunks of his education, he has undergone rigorous blood transfusions, tests and scans, all the while caring for his mum, and supporting his brother as he awaits a diagnosis for ADHD.

With family living abroad, and friendships being difficult to maintain while suffering from chronic illness, Ebeneza and his family have often felt very isolated.

With this renovation project, Rainbow Trust and the Taylor Wimpey team, hope to make life just that little bit easier for Ebeneza and his family.

The renovation will provide Ebeneza with a safe space to recover from his transplant over the next eight weeks, as well as offering him a place of future respite as he continues to strive for an education: He is completing a course in Health and Social Care at Watford College and works part-time as a children’s football coach.

Support from corporate partners like Taylor Wimpey, helps to provide transformational outcomes for families like Ebeneza’s. Taylor Wimpey is in its second year of supporting Rainbow Trust and has raised over £45,000 to date.

Katherine Burgess Corporate and Community Fundraising Manager said:

“When I first heard about Ebeneza and his upcoming treatment, I knew immediately that I was going to ask Taylor Wimpey South Thames Division to help. Rainbow Trust has been partnered with the South Thames division since 2023 and they are an incredibly passionate and dedicated group of people. Since the very beginning of the project Taylor Wimpey have had the families’ best interests at heart and conducted the renovation with such professionalism and warmth. We are incredibly grateful to the whole project team for their support.”

Antonis Pazourou, Project Director at Taylor Wimpey South Thames, said:

 “Ebeneza is an incredibly brave and inspirational young man, and it was a real privilege to have been given the opportunity to refurbish his bedroom. We were delighted to be able to complete the refurbishment in time for Ebeneza's return home, and it’s important I thank our partners at Amtico and Design Contractors for helping make this possible.

“No young person should have to experience what Ebeneza has. It was important to us that our makeover involved someone of a similar age to Ebeneza who was aware of what he’d gone through and wanted to help bring him joy. A bespoke art piece designed by Emilia, the daughter of a Taylor Wimpey South Thames employee, has been included in Ebeneza’s new-look-room, which we’re thrilled about, and we hope he finds solace in it.

“Myself and four of my colleagues really enjoyed transforming his space into a comfortable haven to not only recover in when he returns home but also enjoy for years to come. We wish Ebeneza and his family all the very best, and hope he makes a speedy recovery.”

Rainbow Trust’s Family Support Worker Angie is supporting Ebeneza through his recovery, and since the transplant he has been able to return for a short time, before unfortunately being re-admitted to hospital due to complications. He asked Angie to pass on the message below to the team at Taylor Wimpey:

“I have always wanted to decorate my bedroom and organise it better. Being ill with Sickle means that often any plans that I make to do stuff like this have to be cancelled if I am admitted into hospital or I'm in bed unwell.

When I knew I would be having my Bone Marrow Transplant I thought about the amount of time I would be spending alone in my room after my isolation in hospital and I wished I had, had the time to get my room the way I wanted it.

Whilst I was in hospital, I knew that Angie my Family Support Worker had arranged for my room to be painted but I did not know about the rest of it.

When I came home from hospital, I was amazed at what had been done in my room. I never imagined having a room like this. I have been able to relax so well in my room with the TV. I love that everything has a proper storage place and that I now have a desk to work at when I return to my studies at college. I especially loved the plants. The artwork of my name is brilliant, and I was interested to know this had been done specifically for me by an upcoming artist.

I have a long way to go in my recovery, but this has made me feel so much happier and I am very very grateful to everyone involved that made this happen for me. Thank you so much.” - Ebeneza