Makeover for Bristol homes from home

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Thursday, October 01, 2009
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This is Bristol

They are homes from home for families brought to Bristol because of the serious illness of a child.

Located in Kingsdown, only a few hundred yards away from the Children's Hospital, the two houses offer a comfortable and convenient base for families whose children often have to stay at the hospital for many weeks.

Charly's House and Rhys' House, next door to each other on Saville Mews, celebrated their 10th birthday this week with a makeover, a lick of paint, new carpets and new furniture and fittings, ensuring that they are fit to become temporary homes for families forced to come to Bristol from across the UK for many years to come.

They are named after Charly and Rhys Daniels, siblings who both died from a rare and incurable neurodegenerative disorder called Late-infantile Batten's disease.

Two-year-old Rhys became the first child in the world with Batten's disease to receive a bone-marrow transplant from an unrelated donor, in an attempt to rid him of the illness. Rhys had two transplants, which were his only hope of survival, at the Bristol Children's Hospital in 1993 and 1994, and his family were forced to uproot to Bristol to be near him.

As a result of media coverage, Harrods boss, Mohammed Al-Fayed rented a flat in Bristol for the whole family to use while Rhys was in hospital.

Money that had been sent by well-wishers was used to rent a flat for another family to use while their own daughter was treated at Bristol. And so the idea for the Rhys Daniels Trust was born.

Sadly Rhys died in 1998 but the trust continues in his memory and that of his sister Charly, who died less than two months after him in 1999.

Currently living in Charly's House are the Elliot family from Fermanagh, Northern Ireland.

Marc, five, had a bone marrow transplant at the beginning of this month, and his father Damien and mother Adel, both 26, and brother Matthew, five months, are staying in Bristol, while he remains in the children's hospital.

Damien said that the house is "brilliant and fantastic", adding "We are eternally grateful to the Rhys Daniels Trust. Without them, we would not have been able to be a family."

At the 10th birthday celebrations of the two houses, the charity's founder Barry Daniels said: "This is a very simple concept. All we are doing is helping other families. But it's great to be back here in Bristol where the idea for the charity first begun."

Dr Colin Steward, bone marrow transplant consultant at the Children's Hospital has been involved with the Rhys Daniels Trust since its foundation by Barry and his wife Carmen.

Dr Steward said: "The two houses here mean a huge amount. These families are just ripped out of their home and all the support they had there. The houses mean that some of the awful things the children and families have to go through are just about bearable and everyone is amazingly grateful for that."

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