· The Jones family live in Marden, a small village just north of Hereford in the County of Herefordshire located in the West Midlands region of England.

· In December of 1999, four-year-old Hannah Jones was diagnosed with a rare form of leukemia.

· In 2000 at the age of 5 Hannah received a number of intensive chemotherapy sessions which beat the cancer into remission. However in the course of the treatment she was diagnosed with a condition known as Cardiomyopathy, a serious disease where the heart muscle becomes swollen and sometimes fails.

· Hannah’s heart was left to operate at about 10 per cent of it’s normal capacity. The condition if not treated can lead to complete heart failure.

· From 2006-2008 Hannah endured six operations to put tubes into her heart and additional surgery to insert a tube into her chest.

· During a seven month stay in hospital Hannah suffered a collapsed lung.

· Early 2008: After collapsing at school one day, Hannah was fitted with an elaborate pacemaker (multi-pacer) to help her heart beat more strongly.

· There has not been a month from 2000 to 2008 that Hannah did not spent time in a hospital. She’s lived through more than 20 major operations being close to death more than half a dozen times.

· In July of 2008, doctors gave Hannah 6 months to live and further warned her that her only longer-term hope lay with a heart transplant. Even then they stated that it would probably last ten years at most and that she might not survive.

· Heart transplants are risky operations on any patient – and those risks increase with young people who have had additional conditions like Hannah’s leukemia. The transplants often require patients to be on lifelong anti-rejection medication to prevent their body from attacking their new heart.

· Hannah was also told that without the transplant – she could die at any time.

· At a bedside conference with doctors at Birmingham Children’s Hospital, Hannah declined the transplant. She said that she wanted to die with dignity and spend her final months in peace with her family.

· Her parents were heartbroken but supported her decision. Initially, so did the hospital. But on a subsequent visit she was seen by another local doctor, who was unfamiliar with her choice. He insisted that the transplant was necessary and threatened to have her forcibly readmitted to hospital if she refused.

· The case was also reported to the child protection unit. The law states that a child under 16 may be judged able to give their consent for an operation, but there is nothing written down about them refusing the treatment.

· The Herefordshire Primary Care Trust then initiated legal moves to have Hannah removed from her parents’ care on the grounds that they were ‘preventing treatment’.

· The father Andrew Jones received a phone call one night warning him Hannah would be removed from the family by court order unless they agreed to her having the transplant.

· On November 7, 2008, a child protection officer was called in, threatening to remove Hannah from her home and force her to have the transplant. Hannah was left to plead her case to the child protection officer from her bed. In the end she was able to convince the official that the transplant was not in her best interest and that she wanted to spend the rest of her short life at home in the company of her mother and father, 11-year-old brother Oliver and sisters Lucy, 10, and Phoebe, four.

· The Trust then abandoned the High Court proceedings. It released their decision to not apply for the Court order. Part of it read “ Hannah appears to understand the serious nature of her condition. She demonstrated awareness that she could die. Treatment options were discussed and Hannah was able to express her clear views that she did not wish to go back into hospital for cardiac treatment. Hannah is clearly attached to her family and wishes to be cared for at home”

· Dr. Tony Calland, chairman of the British Medical Association's ethics committee, said a child of Hannah's age was indeed able to make an informed decision to refuse treatment. He said the House of Lords had ruled in the 1980s that a child who understood the issues and consequences could be considered legally competent.

· Hannah was allowed to remain with her parents.

· At this time Hannah was able to continue attending school although infrequently – depending on her health. When unable to attend classes, she was tutored from home.

· On July 12th, 2009 – five days after celebrating her 14th birthday, Hannah suffered partial renal failure and her kidneys suddenly stopped fully working. She was returned to the intensive care unit at the Birmingham Hospital.

· Hannah could not receive the necessary dialysis because her heart - which was only beating on one side – was too weak to cope with the treatment. Her choices became limited – either go on the transplant list or suffer total kidney failure.

· Hannah did change her mind and asked to be placed on the transplant list. Fortunately she was placed at the top of the list.

· She was assured that she had a good chance for a full recovery. She noted: “The right side of my heart isn’t beating at all and after lots of tests I realized there were more benefits to having a new heart to staying like I was. If I had a new heart , I’d be on less tablets than I am at the moment. I take 27 but afterwards it would be about 12."

· In late July of 2009 she was airlifted from Hereford to London for an operation at The Great Ormand Street Hospital for Children.

· Kirsty on Hannah's condition before the operation: "Hannah was really quiet... and very nervous. The last thing she said to me before the anaesthetic kicked in was, 'I love you mum.'"

· After a six-and-a-half-hour operation Hannah spent a further twelve days lying unconscious in intensive care because the medical team could not close her chest cavity given the size of the transplanted heart.

· The open heart was covered with a clear protective dressing.

· When she woke up, Hannah had initial difficulty in speaking – eventually she managed to say ‘drink’

· The identity of the heart donor was never revealed. But it is believed that the organ can add 25 years to her life.

· ''Hannah's change of mind came because she has enjoyed her life so much over the last year that she wanted more of it," said her father. "I'm obviously really happy with her decision but me and her mum didn't put any pressure on her we just gave her all the options and offered support."

· It wasn’t over yet. In all, Hannah spent three weeks in hospital and then had to also battle swine flu and pneumonia within the months after the operation.

· Since December 2009 Hannah has returned to school attending St. Mary’s Lugwardine three days a week.