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 that within a few short years their lives would be changed forever. 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 in that they were willing to carry out 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 appearing when he reached the age of 3. They had a window of hope.
After finding a bone marrow donor and a pioneering team of doctors, disaster struck. With no consultation to the Daniels family – or any other family awaiting treatment – the Government took the decision 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. With money that had been sent in by well-wishers Barry and Carmen rented a flat close to the hospital. This accommodation provided the support for Nichola and her family, and offered a safe haven for the after care and specialist treatment Nichola needed after her transplant.
It was such a simple gesture but it 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 many hundreds of families.
We are very fortunate to have the support and partnership of a variety of companies and individuals for which we are always grateful. Our sincere thanks go to :
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’.
Pimlico Plumbers have sponsored and attended many of our events, both in the UK and Spain, over a number of years. They are able to provide services for a variety of domestic maintenance requirements. With a workforce of over 270 their tradesmen are highly experienced and skilled in their craft.www.pimlicoplumbers.com
NEXT are generous, long term supporters who have provided donations of items for our ‘Homes from Home’ and event goody bags, taken out adverts and sponsorship for a variety of events and we are so grateful for their continued support.www.next.co.uk
Harley Street Skin’s clinic
Harley Street Skin’s clinic has built a world class reputation for specialising in minimally invasive treatments for Facelift, Fat Transfer, Breast Enhancement and Skin Repair in addition to tailor made, customised skincare. They have been long term supporters and sponsors of a number of our events in the UK and in Spain.www.harleystreetskinclinic.com
Alan Day Volkswagen
Alan Day Volkswagen is an approved VW dealer with branches in Walworth, Southgate, Hampstead and the City. They have sponsored our London Butterfly Ball events and donated cars for fundraising raffles.www.alandayvw.co.uk
W7 is an incredible budget make up brand with a huge variety of products. W7 have kindly sponsored our events in London and in Spain for a number of years.w7makeup.wordpress.com
Aitch Group is a highly regarded residential and commercial developer that specialises in acquiring development sites for residential schemes. As well as sponsoring a London Butterfly Ball a team from Aitch Group took part in an Arctic Circle sledging challenge in 2012 for the Rhys Daniels Trust. This was an incredible achievement and raised a fantastic amount of money for the Trust.www.aitchgroup.co.uk
A huge thanks to the Epping Sports Centre, which is part of the Everyone Active group of sport and leisure centres. The Epping Sports Centre has supported our Epping Family Fun Run since its creation 18 years ago.www.everyoneactive.com
Euro Weekly News
Euro Weekly News – one of the most successful, respected and long standing media companies in Europe being the largest English language newspaper in Spain. They produce six different newspaper editions on mainland Spain and the island of Mallorca. They have supported and sponsored our events in Spain for a number of years.www.euroweeklynews.com
We currently work with six specialist children’s hospitals around the UK. Below are their comments about how the Rhys Daniels Trust helps them and the patients they care for.
BRISTOL ROYAL HOSPITAL FOR CHILDRENFind out more
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 the majorit ...
KING’S COLLEGE HOSPITAL, LONDONFind out more
King’s College Hospital is one of London's largest and busiest hospitals, with a strong profile of local services primarily serving the boroughs of Lambeth, Southwark, Lewisham and Bromley. King’s also specialises in providi ...