About Us
Where It All Began
The Rhys Daniels Trust
When Barry and Carmen Daniels welcomed their first child, Charly, into the world in 1988 and her little brother Rhys in 1990, they had no idea their lives would change within a few short years. At the tender age of 3, Charly was diagnosed with a rare neurological degenerative disease called Late Infantile Batten’s Disease. The prognosis was devastating. There was no cure and no treatment.
Having received this horrendous news about Charly, their thoughts turned to Rhys, who was just 15 months old. On Friday, 13th March 1992, they received the news they had feared. Rhys had tested positive for the disease too. They set about finding any form of treatment that may help. Fantastic news came from the Westminster Children’s Hospital in London that they were willing to conduct a medical ethical review for a bone marrow transplant on Rhys, who would become the first Batten’s child in the world to have this pioneering treatment. It was hoped that the transplant would prevent the disease from appearing when he reached the age of 3. They had a window of hope.
Continued...
After finding a bone marrow donor and a pioneering team of doctors, disaster struck. With no consultation with the Daniels family – or any other family awaiting treatment – the Government decided to close the bone marrow unit at the Westminster Children’s Hospital. With time ticking away for Rhys, the decision was taken to sue the Secretary of Health. Rhys became a household name, and a media frenzy began. Whilst this highlighted the family’s plight, in reality, Rhys’ treatment had been unlawfully denied, and vital time had been lost in the race to save his life.
Hope reappeared in July 1993 when Rhys was offered a bone marrow transplant at Bristol’s Royal Hospital for Sick Children. The family were forced to relocate from their home in Essex to a rented property in Bristol to be near Rhys and to be able to offer the best care they could for a rapidly deteriorating Charly.
Following the rejection of his bone marrow transplant, Rhys underwent a second procedure in August 1994 and, for a second time, the Daniels family were housed in a flat rented for them by Mohammed Al Fayed, who, at the time, was the owner of the famous Harrods store in Knightsbridge. Mr Al Fayed had become involved after the story became national news.
When Barry and Carmen met the Swales family, whose daughter Nichola was receiving the first-ever transplant for a Juvenile Batten’s child, and saw the condition of the accommodation they were staying in, they knew they had to help. Money that had been sent in by well-wishers Barry and Carmen rented a flat close to the hospital. This accommodation provided support for Nichola and her family and offered a safe haven for the aftercare and specialist treatment Nichola needed after her transplant.
It was a simple gesture but evolved into the creation of the Rhys Daniels Trust and the desire to offer as many families as possible the same facilities when faced with caring for a very ill child a long way from home.
Both Rhys and Charly sadly lost their fight against Late Infantile Batten’s Disease, but they left behind the most incredible legacy, which has helped hundreds of families.
Support & Partnerships
Our Partners
Insursec – commercial insurance brokers who provide a personalised service to both its business and personal clients by providing ‘tailor-made’ solutions to insurance needs.
Insursec generously provide office space for the Rhys Daniels Trust and also ensure that we have the most competitive and comprehensive insurance cover for the office and for each of our ‘Homes from Home’.
39D IT Support is an advanced tech organization that provides essential support in IT solutions. They are dedicated to delivering exceptional services to businesses, ensuring smooth and uninterrupted operations. With a focus on security, data management, and remote assistance, they excel in maintaining the integrity and efficiency of their clients’ IT infrastructure.
Unearth Digital is a digital marketing agency specialising in local search engine optimisation and web design assisting local businesses improve their ranking on search engines, thereby boosting their reach and impact. Committed to giving back to the community, Unearth Digital met with the Rhys Daniels Trust at a business event and was deeply moved by their cause. Recognising the potential of digital platforms to share the inspiring story of the Rhys Daniels Trust and gather more support, Unearth Digital offered their expertise in refining the charity’s website to enhance its online presence and further its noble mission.
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Care
The Hospitals
The Haematopoietic Stem Cell Transplant Service at Bristol Royal Hospital for Children receives referrals from around the UK, including Northern Ireland, Wales, Southampton, Oxford, Cambridge and South West England. In most cases, our patients and their families are not local. The accommodation provided by the Rhys Daniels Trust enables the hospital to offer patients receiving treatment (and their families) a place to feel comfortable and at home during a difficult time.
The Stem Cell Transplant Service at the Bristol Royal Hospital for Children treats various malignant and non-malignant diseases, including leukaemia, bone marrow failure syndromes and metabolic disorders.
Stem cell transplants at the Bristol Royal Hospital for Children are carried out on ward 34, a state-of-the-art 17-bed unit which looks after children with Oncological and Haematological disorders as well as children immediately before, during and after their transplant. The Stem Cell Transplant Service performs transplants using bone marrow, peripheral blood stem cells or cord blood cells from related or unrelated donors, and autografts utilising the patient’s stem cells. Approximately 40 paediatric auto- and allografts are performed each year.
The Stem Cell Transplant Pathway
The patient pathway varies from patient to patient, but the typical stem cell transplant journey follows. Once patients are admitted for transplant, they begin their ‘conditioning’ phase. Patients have intensive doses of chemotherapy (and sometimes radiotherapy) to remove their immune system to ensure a successful engraftment of their donor’s stem cells. Conditioning lasts from 7 to 10 days. Patients then receive their donor’s stem cells, and after this day, they remain in isolation in their cubicles. The length of isolation varies significantly from patient to patient, lasting from 4 to 8 weeks. Patients are then discharged from the inpatient unit but remain in Bristol for several weeks (sometimes months) to enable close monitoring by the stem cell transplant team within our outpatient department.
The ‘Homes from Home’ provided by the Rhys Daniels Trust are invaluable to our patients throughout the transplant stages. Rhys’ House and Charly’s House enable patients to spend quality time with their families in a home-like environment with their siblings and other family members who can also support both patients and each other during this challenging journey. The Homes are particularly important for families that temporarily relocate their whole family to remain a family unit. Patients stay in Rhys’ and Charly’s House during their outpatient period with their family. They can spend quality time in a comfortable environment while knowing they are a short distance from the hospital.
All the Stem Cell Transplant Service staff at Bristol Royal Hospital for Children would like to express our thanks and gratitude to the Rhys Daniels Trust and all of their supporters.
Addenbrooke’s Hospital is a renowned medical institution located in the city of Cambridge. Known for its cutting-edge research and exceptional patient care, the hospital caters to various health conditions, from routine check-ups to specialised treatments and surgeries. The institution prides itself on its dedicated team of healthcare professionals who work tirelessly to ensure the best possible patient outcomes. In addition to standard care, Addenbrooke’s Hospital is instrumental in conducting groundbreaking research in various medical fields, contributing significantly to advancing global health initiatives.
In collaboration with the Rhys Daniels Trust, Addenbrooke’s Hospital can further support its patients and their families during challenging times. The Trust provides “Homes from Home”, comfortable and private accommodation near the hospital, where families can stay close to their children receiving treatment without worrying about travel and lodging logistics. These homes offer a much-needed space for families to rest, recharge, and spend quality time together, easing the strain of a demanding medical journey. This partnership reflects a shared commitment to holistic patient care, considering not just the medical needs of the child but the emotional and practical needs of the entire family. Addenbrooke’s Hospital sincerely appreciates the invaluable contribution of the Rhys Daniels Trust to their patient community.
The Royal Marsden Hospital in Sutton is a world-leading cancer centre with the highest patient-centred care, research, and education standards. Their profound commitment to improving the lives of their patients is notably complemented by the support they receive from the Rhys Daniels Trust. Our Trust’s initiative provides the patients and their families at the Royal Marsden Hospital with a comfortable and homely environment close to the hospital during their treatment journeys. This significantly reduces the emotional and logistical stress that families often experience, allowing them to focus on supporting their loved ones undergoing treatment. The unwavering support provided by the Rhys Daniels Trust to the Royal Marsden Hospital community is deeply appreciated by the hospital staff and the families that benefit from it.
