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Helen House visitors royally received
8:30am Thursday 12th December 2013 in News
CHRISTMAS came early for a young child with a life-threatening disorder yesterday.
Sami Khan, one, was treated like a king at the London home of Prince Charles and the Duchess of Cornwall yesterday.
The toddler, of Nye Bevan Close, Cowley, is thought to be the only person in the UK with a rare genetic disorder.
He was one of 12 children and young adults cared for at Helen and Douglas House hospice in East Oxford who helped decorate the royal Christmas tree in the library at Clarence House.
They were invited to meet and have lunch with Camilla, The Duchess of Cornwall, who is the patron of the Magdalen Road hospice.
This year was the eighth time children from the hospice have been invited to Clarence House by the Duchess.
Sami was all smiles as the Duchess greeted him and met his parents.
Sami’s father, Waqas Khan, 29, said: “It made us feel like royalty. My feet are not even touching the floor right now.”
His mother, Madia Rahim, 26, said: “Never in my wildest dreams did I think I would get to meet the Duchess. Sami was so smiley – he was really happy.
“It has been a really special day, but every day is special for him because we don’t know how long we have with him.”
Sami was born at the John Radcliffe Hospital in Headington and diagnosed with infantile systemic hyalinosis at eight weeks old. The disorder causes painful bumps on the body and affects the skin, joints, bones, and internal organs.
It makes it difficult for him to move and means he will never be able to walk.
Mrs Rahim’s sister had the same condition and died aged four 28 years ago.
Sami was dressed in his first suit for the occasion and helped hang a star on the royal Christmas tree.
The Duchess of Cornwall said: “I wish you all a very happy Christmas. It is lovely to have you here.”
Two Oxfordshire boys with muscular dystrophy were also among the guests.
Samuel Bailey, 16, from Black Croft in Wantage, presented the Duchess with flowers as a thank-you from the hospice.
The Abingdon and Witney College student said: “It was amazing to meet her. It has been really special.”
Ethan Browne, 12, headed home after meeting the Duchess to put up his family Christmas tree at home in Market End Way, Bicester.
His mother, Amanda Browne, 42, said: “Every Christmas we have with him is very special. We don’t want him to grow up in one way, because as time goes on we know he will get worse.
“It was really lovely to meet Camilla. We spoke about how magical Oxford looks at Christmas.”
Chief executive of Helen and Douglas House, Tom Hill, said: “Memories are so important. Can you imagine, in years to come, when the children are no longer at the Christmas table, still having those memories?”
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