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Imagine if it was one of your children, born seemingly healthy and vibrant, showing all signs of developing normally towards an active, independent adult life. Then a shockingly untimely death sentence is placed on their young innocent heads – a degenerative disease that gradually robs them of life whilst all their parents can do is watch and wait.
Barry and Carmen Daniels, founders of the Rhys Daniels Trust, were two such parents when the thankfully rare Batten's disease struck their daughter Charly and son Rhys. Barry and Carmen's lives were taken up with caring for their very sick children, but rather than spiraling into self-pity Barry and Carmen decided to use their experiences and tragedy to support, and help, other parents and families who found themselves in a similar position.
Charly and Rhys sadly passed away but left a lasting legacy in the Rhys Daniels Trust. This is just the beginning of the story...
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> 1991-1995
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> 1996-2000
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> 2001-2005
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> 2006-2010
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February 1992
"I am sorry, but we have some really bad news..."
Barry and Carmen Daniels are given the devastating news that their four-year-old daughter, Charly, has incurable Late Infantile Batten’s Disease. This rare genetic childhood disease leads to an early death, so their thoughts also turn to Charly's brother, 15-month old Rhys.
March 1992
Rhys tests are positive
Barry and Carmen receive the news they feared. Rhys' tests are positive and he too will develop Late Infantile Batten’s Disease.
June 1992
Glimmer of hope
Westminster Children's Hospital offers Barry and Carmen a glimmer of hope to save Rhys. They are willing to carry out a high-risk bone marrow transplant. The operation has never been tried on a child anywhere in the world before.
July 1992
Search for a saviour
The Epping Gazette launches a worldwide search to find a bone marrow donor to save Rhys.
August 1992
Appeal to help tragic children
A donor is found, and it is hoped Rhys will soon be undergoing the potentially life-saving operation.
March 1993
Nurses in tears
Barry and Carmen discover that Westminster Children's Hospital, which is Rhys' only chance of survival, is to be closed by the government to save money.
March 1993
PRICE OF A CHILD'S LIFE?
The London Evening Standard newspaper runs the headline 'Price of a child's life?' Further national press coverage leads to Barry and Carmen receiving a call from a legal adviser asking if they are willing to help fight the government’s decision to close the hospital.
April 1993
The fight begins...
The world's media picks up the story and Rhys Daniels becomes a household name. The Daniels believe this coverage will aid their fight to save the hospital, and potentially their son's life too.
May 1993
£500,000 gift of hope from Harrods!
Harrods owner Mohammed Al Fayed, who has followed the family's story, offers financial and legal help.
June 1993
No. 10 doorkeeper meets child waiting for transplant
The Daniels family visits Downing Street, and Rhys bravely hand-delivers a petition protesting against the hospital’s closure.
June 1993
JUDGES ATTACK DECISION TO CLOSE CHILD UNIT
At the High Court in the Strand the judge attacks the government's decision to close the hospital, and accuses them of acting unlawfully. Rhys is promised treatment at Bristol's Royal Hospital for Sick Children. It is eight months late and a race-for-life, because the transplant has to be done before Rhys is three.
July 1993
BONE MARROW BOY ASKS FOR A JAM SANDWICH AT 2AM
Treatment begins at last. The Daniels family move to Bristol, where Rhys will undergo a minimum of 2 weeks preparation for his bone marrow transplant and then 6 weeks in isolation. They move into a rented property provided by Al Fayed.
October 1993
Home at last!
Feeling hopeful, the family returns home to Epping, Essex. Following three months of treatment, two-year-old Rhys has recovered quickly and astounds everyone with his speed of recovery and energy.
February 1994
Rock star Brian May: I'll be a donor to save Rhys
Agonisingly Barry and Carmen are informed that Rhys' body is rejecting the bone marrow. Barry said: "We felt cheated. Had we put Rhys through all of this for nothing?" Working with Queen guitarist, Brian May, Barry and Carmen launch a national bone marrow campaign to find a second donor, and even Brian was tested. Eventually a campaign by the Daily Express finds a suitable donor – only 1 out of every 200,000 will match.
July 1994
Rhys in new battle for life
Sadly Charly is now too frail to travel to Bristol with Rhys, so the family is separated for the first time. This proves to be the hardest and most difficult period – especially for Rhys, who is bravely undergoing an awful second transplant. The Daniels' guardian angel, Al Fayed, kindly arranges accommodation in Bristol for the family.
August 1994
PRAY FOR RHYS
The nation prays for Rhys. Just hours before the second bone marrow transplant to save his life, a brain scan discovers that his brain waves are irregular. Fears set in that this could be the onset of the dreaded Late Infantile Batten's Disease. Rhys is living in a sealed unit and enduring a daily cocktail of eight different drugs which are being pumped directly into his stomach. His bravery and courage astounds everyone.
August 1994
We must do something...
While Rhys is receiving treatment, Barry and Carmen meet another family whose child has Juvenille Batten's Disease. And when they see the quality of accommodation this family are living in while their daughter is in hospital, they know they have to help. Many kind well-wishers had sent money to help Rhys and Barry and Carmen decide to use this to rent a suitable flat near the hospital for this family. This proves to be the beginning of the Rhys Daniels Trust, and Rhys' House opens its doors for the first time.
October 1994
Bill Wyman's launch party for the Daniels Charitable Trust
Following his second bone marrow transplant Rhys shows signs of improvement. Bill Wyman from the Rolling Stones is so touched by the family's story he contacts Barry and a Rhys Daniels Trust launch party is held at Bill's Sticky Fingers restaurant in London. It is a huge success, raising awareness and funds for the charity.
December 1994
THE MOMENT A BRAVE BOY FOUND IT ALL TOO MUCH
Rhys meets the Duchess of Kent and is overcome with emotion, he is one of only eight children to receive a Children of Courage Award at Westminster Abbey. Barry Daniels said: "We felt that Rhys had earned that award…but not just for himself. For his big sister Charly too."
January 1995
"His courage never ceases to amaze us"
Rhys' courage and resilience continues to amaze doctors, although they are still unsure if the second transplant has been a success Rhys takes a daily cocktail of drugs, and for two hours every day is connected to a drip.
December 1995
Something to celebrate
Whilst caring for their dying seven year old daughter Charly, and nursing their five-year-old son Rhys, Barry and Carmen continue to develop the charitable Trust. They celebrate its first anniversary with articles in the Daily Express and Daily Mail to raise awareness and funds.
January 1996
Barry and Carmen celebrate the birth of their second daughter, Bliss, who is mercifully free of the disease.
October 1996
Tragic Rhys is slipping away
Rhys is now almost blind and confined to a wheelchair, yet Barry and Carmen still find the strength to support the Trust. They organise the first ever Batten Ball, the Hurtwood Park Polo Club Charity Event and an Epping Fun Run. These three events raised over £30,000.
September 1997
"OUR LITTLE BOY HAS SUFFERED ENOUGH. IT'S TIME TO LET HIM GO"
Our son Rhys has suffered enough it is now time to let him go – Rhys' health deteriorates, and Barry and Carmen decide that he and his sister Charly will not receive any further hospital treatment. Instead they will stay at home with their parents until the end.
October 1997
CHARITIES SECOND BALL RAISES £35,000!
Barry, Carmen and amazingly Rhys, attend the second Batten Ball. The Ball is supported by stars such as Jonathon Ross and raises £35,000. The Trust now has the funds to start building its first Home.
February 1998
The Trust holds its first Valentine's Ball and raises £60,000.
April 1998
Charly celebrates her 10th birthday!
June 1998
'The Gift of Life!'
Eastenders' stars, Patsy Palmer and Martine McCutcheon team up with the Trust's Vice-Patron and PR guru, Max Clifford, to record a country and western track entitled 'The Gift of Life'. Barry Daniels personally writes the lyrics for the song and all funds raised go to the Trust.
23 December 1998
"HE LOOKS SO PEACEFUL. WE TELL HIM HOW MUCH WE LOVE HIM. I SOB UNTIL I THINK MY HEART HAS BROKEN"
Rhys Daniels, the adorable seven-year-old boy who had captivated and inspired a nation with his courage, dies peacefully at home.
11 February 1999
"I HOPE THAT YOU AND RHYS WILL BE HAPPY WHEREVER YOU ARE. ALWAYS KNOW MY PRECIOIUS GIRL, THAT YOU WILL NEVER EVER BE FORGOTTEN"
Charly, who had bravely fought Late Infantile Batten's Disease for seven years, dies at home with her parents at her side. Charly and Rhys are reunited, and will no longer feel any pain.
May 1999
The Duchess of Kent launches the 'Home from Home' Appeal
The Duchess of Kent, Patron of The Rhys Daniels Trust, welcomes Barry and Carmen to Kensington Palace for the official launch of the 'Home from Home' Appeal. This scheme provides free accommodation to enable families to stay together while a child is receiving hospital treatment.
May 1999
The houses that Rhys and Charly built
Good news! Charly's House and Rhys' House open in Bristol. The charity's Vice-Patron, Pauline Quirke, is there to cut the ribbon along with Barry and Carmen and their three-year-old daughter Bliss, who is thankfully clear of the Batten's gene. The House openings are timed with the news that Barry and Carmen are expecting their fourth child, who is also free of the Batten’s gene.
May 1999
COURAGEOUS CHILDREN OF THE YEAR
Barry and Carmen step on stage to accept the Pride of Britain Award on behalf of their children, Rhys and Charly. Victoria Beckham says: "I hope my little boy Brooklyn grows up to be half as strong as these people here today."
November 1999
Barry and Carmen celebrate the birth of their third daughter, who is aptly named Hope.
2000
"It's all about love, laughter and giving!"
The Rhys Daniels Trust has a fantastic year of fundraising, reaching its first million pound target. An amazing achievement!
June 2001
The second 'Home from Home' location opens in Liverpool, near Alder Hey Children's Hospital.
December 2001
A Christmas gift
Just in time for Christmas, a third 'Home from Home' location opens, supporting The Variety Club Children's Hospital at King's College Hospital, London. The two million pound fundraising milestone is also reached.
September 2003
All the tireless fundraising work is rewarded with the opening of a fourth 'Home from Home' Project at Birmingham Children’s Hospital.
2004
10 years on and £3.5million raised – an amazing achievement!
The Trust celebrates its 10th Anniversary. In that time it has raised £3.5million pounds, helped over 200 families and has opened ten Homes in four UK locations – a fantastic memorial to the lives of Rhys and Charly Daniels.
August 2005
The Homes at the Royal Marsden Hospital, Surrey, opens their doors.
May 2006
Continuing the work
Fundraising work continues with the Classic Soaps Charity Bike Ride. The 205-mile race takes place at the end of May and is led by Eastenders' Ian (actor Adam Woodyatt). The event raises £50,000.
November 2007
Glamorous fundraising night
The annual Butterfly Ball continues to prove a glamorous fundraising night, which raises the money necessary to allow the Trust to continue its essential work.
> View images from the 2007 Rhys Daniels Trust Annual Butterfly Ball
December 2007
The Trust's sixth Home is opening in Wales, supporting the all-new Children's Hospital in Cardiff.
November 2008
Amazing fundraising – thank you!!
Completing a top fundraising year, the 2008 Butterfly Ball raises a record breaking £160,000. The Trust cannot thank its supporters and corporate sponsors enough!
> View images from the 2008 Rhys Daniels Trust Annual Butterfly Ball
June 2009
Raising funds on the green
The Max Clifford Celebrity Golf Challenge, held for the 9th year, proves yet again to be another massive success. The event raises more than £150,000 and is supported by celebrity guests including Chris Eubank, Bobby Davro, Des O’Connor and Jean-Christophe Novelli.
> Visit our special 2009 Max Clifford Celebrity Golf Challenge mini-site
September 2009
The Bristol 'Home from Home' celebrates its 10th Anniversary. These Homes have provided a lifeline to hundreds of families.
November 2009
Star-studded fundraising support
The Butterfly Ball continues to be heavily supported. The Ball raises over £150,000 and features a fantastic performance from singer Billy Ocean. Other surprise star guests include: Tony Hadley, Steve McFadden, Martin Kemp, Max Clifford, Vanessa Feltz, Craig Fairbrass, Linda Lusardi, Billy Murray and Pauline Quirke.
> View images from the 2009 Rhys Daniels Trust Annual Butterfly Ball
2010
OUR VISION OF THE FUTURE
The Rhys Daniels Trust continues to grow, and the Trust's 'Homes from Home' are a lasting tribute to the short but memorable lives of Rhys and Charly Daniels. But more importantly they provide a perfect environment for children and their families whose lives are affected by serious illness. It is of paramount importance that we continue to raise funds to ensure that 'Homes from Home' are available in the future.
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A message from Barry Daniels:
"We thank you for the generosity of your support so far. We are constantly delighted and amazed by the support and kindness that we are shown. We would like to take this opportunity to thank each and every person who has supported us over the years and ask that you continue to support us to enable more facilities to be opened and, in turn, more families to be helped."
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How can you help?
We need your financial support, large or small, to help fund these special 'Homes from Home' and to continue the Trust's vital work.
Your generous donation really will make a big difference!
Please click here and visit JustGiving.com
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