By Tessa Cunningham
Last updated at 10:35 PM on 25th December 2008
For Hannah Jones, it was a Christmas Day perfect in every way. Lots of lovely food, presents and, best of all, she was at home.
Hannah was determined to spend the day with her loving family because this could be their last Christmas together.
She is the brave 13-year-old leukaemia victim who recently won a High Court battle for the right to refuse a heart transplant which could save her life.
At the time she declared: 'Being in hospital reminds me of bad times. I've spent long enough there. I just want to be home - even if my life might be shorter.'
Those poignant words hung over Hannah's family as they put in an extra-special effort to create yesterday's magical Christmas.
Even though money was tight, they spared no expense decorating their house in Hereford with the tallest tree from the garden centre, the twinkliest decorations and of course, the best and fanciest presents for all their four children.
'It was the most perfect day,' said Hannah. 'I'm just so lucky to be here. Being with my family is all I want. It's been very important to celebrate this Christmas as if it were the last. I believe it won't be, I have so much to live for, but the truth is no one knows exactly how long is left.'
Hannah has been fighting acute myeloid leukaemia since she was four.
Last year tests showed her heart was severely enlarged as a side-effect of chemotherapy and doctors said her best chance was a transplant, although it would be risky with no guarantee of success.
When she refused and asked to go home, Hereford Hospital started High Court proceedings to remove her from her parents' custody to allow the transplant - accusing them of 'preventing' their daughter's treatment and threatening to send police officers to remove Hannah forcibly from her home.
It was only when she convinced a child protection officer that she knew her own mind, that proceedings were finally dropped.
And that gave her the chance to spend Christmas at home with her parents Andrew and Kirsty, brother Oliver, 11, and sisters Lucy, ten and four-year- old Phoebe.
'I had a brilliant Christmas morning,' said Hannah, grinning from ear to ear.
'I felt a little tired, but we all got up at the crack of dawn to rip open our presents. I got loads of make-up and a new High School Musical game for my Nintendo DS.
'I also got the Addams Family on DVD so I'm going to get into bed and watch that later when I'm too tired to stay up. My best present was a Disney bracelet from my dad - it's really pretty.
'I know the doctors don't expect me to live much longer. But I've proved them wrong and I will do so again if I have to.'
The family's Christmas celebrations actually kicked off earlier in December with a trip to Walt Disney World in Florida.
It was touch and go whether the family could fly because Hannah's health was so precarious until an anonymous benefactor offered £200,000 in insurance cover.
The family stayed at Give Kids The World - a village specially designed for sick children. Hannah's face lights up as she recalls the treats she enjoyed.
'The chalets were all painted bright colours and lit up with fairy lights. It was magical,' she grins.
'We had our meals in the Gingerbread House where the tables were all made out of sweets. It was amazing. There was a miniature train running around the village taking us to whatever play park or ice-cream parlour we fancied. We could eat free banana splits all day. It was fantastic. Seeing Phoebe's face when she met Mickey Mouse was just amazing.'
The Disney trip was followed by another special event when Hannah and her mother were invited by Prince Charles to help him and the Duchess of Cornwall decorate the Christmas tree at their London home, Clarence House.
'I had to pinch myself that it was really happening,' says Hannah, still brimming with excitement. 'Not many people get the chance to meet Prince Charles.
'We got a letter saying what we were supposed to wear. It said, "No denim please" which was fine as I don't wear a lot of denim. I was so excited. I showed the letter to all my schoolfriends - it was the only way they would believe me. There were eight children and we each got to chat to Prince Charles - Camilla was ill in bed on the day. He was so sweet - much smaller than I'd imagined and quiet.'
Hannah's mother, an intensive care nurse, said: 'Seeing her with the prince by the Christmas tree and Hannah asking, "Can you just stand over there while I take your photo?" was magical.
'After the children had decorated the tree, we all went through to the dining room for lunch. It was a real family room full of snaps of William and Harry as boys.
'There were bow-tied waiters who served the children sausage and mash in the shape of faces. The mums had salmon sandwiches and champagne.'
Although Camilla was too unwell to join the party, she made a surprise appearance at the end.
'Just as we were leaving she appeared on the stairs,' recalled Mrs Jones.
'She had no make-up on - I don't think she'd even brushed her hair. She waved at us and said, "I can't come down because I've got flu but thank you for coming".'
Back at home, Hannah helped prepare the family's festive meal and organised a party on Christmas Eve for family and friends.
'I was excited about opening my presents on Christmas morning but the best part was watching Phoebe,' she said.
'She was wild with happiness. She was ripping the paper into shreds and throwing it over her head like confetti.'
The celebrations were in marked contrast to the same time last year, when Hannah returned home from the hospice where she had been staying for a fortnight. She was too ill to eat or even leave her bed for more than a few minutes.
'This year was wonderful,' she said. 'We have a tradition that we set fire to the Christmas pudding. When Mum brought it into the room all flaming, I knew it had been the best Christmas ever.'
