|
|
QUICK LINKS TO THE SITE NEWS
ENTERTAINMENT
MOTORS
WHERE TO STAY
PROPERTY TO RENT
INFORMATION
BUSINESS
FEATURES
DETAILS OF OUR ADVERTISING & DESIGN PACKAGES MISC.
|
The Rhys Daniels Trust
The Family Story
In 1992, Barry and Carmen Daniels learnt that their two children were suffering from a rare and incurable neuro-degenerative disorder called ‘Late-infantile Batten’s Disease’. Like any parents, they were determined to search for any possibility of a treatment to save their lives. For Charly, aged 4, having already begun suffering the effects of the disease, it was too late for treatment. For Rhys however, 2 years old and being pre-symptomatic there was a window of hope. Rhys became the first child in the world to receive 2 pioneering bone-marrow transplants in the hope to rid him of this relentless disease. Unfortunately, and to the dismay of the family, the treatment proved unsuccessful. His courage captivated the nation, but time was always running out for this adorable little boy. After a long and courageous battle, Rhys died peacefully at home on 21st December 1998, a week before his eighth birthday. Sadly, his big sister Charly passed away just weeks later on 10th February 1999 having also battled against this cruel disease. The fact that so many had benefited from Rhys’ & Charly’s short lives gave their parents the inspiration to set up the Rhys Daniels Trust to help other families with seriously ill children. Since it’s launch back in October 1994, the aim of the charity has been to provide “Home from Home” style accommodation at specialist children’s hospitals around the UK. It was with immense pride that the Rhys Daniels Trust opened the very first ‘Home’ in May 1999 in support of the Bristol Royal Hospital for Sick Children. The second ‘Home’ opened in June 2001 in support of Alder Hey Children’s Hospital, Liverpool. The third project in support of the Variety Club Children’s Hospital at Kings College, London is currently in the throes of being refurbished and is scheduled to open later this year. The Rhys Daniels Trust is now furiously fundraising to provide a much needed accommodation unit in support of Birmingham Children’s Hospital. Barry and Carmen’s daughters Bliss, who is now five years old and Hope who is one year old, are both free of the cruel and debilitating childhood illness and represent the greatest Gift of Life that the Daniels family could now wish for.
Bliss and Hope Daniels Why we provide “Home from Home” care The trauma of having a child diagnosed with a life threatening illness is shattering. Imagine then for one moment the added stress that such families face because their child has to be treated many miles from home. It could happen to anyone, and is happening all the time to many families in this country. The Daniels family had personal experience of this when their son Rhys was treated for many months at Bristol’s Children’s hospital 200 miles from home. There they were given a choice of communal facilities with bedsit rooms or bed and breakfast properties. They discovered the need for proper self-contained homes close to the hospital, offering privacy and comfort. Such simple requirements that feel like luxuries to families at such a difficult time. The aim of the Rhys Daniels Trust is to provide ‘HOME from HOME’ style accommodation at children’s hospital in the UK. The opening of the Bristol ‘Home from Home’ took place in May 1999 in the presence of our Vice-Patron Pauline Quirke. Our second ‘Home from Home’ supporting Alder Hey Children’s Hospital opened on Monday 18th June 2001, by friends of the charity Sam Janus & Mark Womack. The charity is now working on ‘Home from Home’ projects at Kings College Hospital, London and Birmingham Children’s Hospital. The future is looking very promising. For further information contact:
We are Members of the Birmingham Chamber of Commerce If you wish to contact us either : PHONE 0121 444
4723
or E-Mail us on :
Do you want to link to our site ? Feel free to use the Image below , let us know and we'll give a return link.
BACK TO BIRMINGHAM101 HOME PAGE
|
||
