My most perfect day: Brave Hannah at home for what could be her last Christmas

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.'

Their dreams are insured

MYSORE: Sameeulla (31), who has studied up to VIII standard, works as a head loader at Devaraja Market in Mysore. He dreams of making his daughter Noor Afreen, born on April 25, 2006, a doctor. He hopes that Bhagyalakshmi scheme will come in handy for this.

After the birth of the child in K.R. Hospital, the doctor on duty informed him that their daughter was “lucky” as she will get the benefit of Bhagyalakshmi scheme. With the help of the anganawadi worker, they received an insurance bond from LIC in just three months, says Noor Asma, mother of the child.

“I have a son studying in pre-nursery school. I wanted her to study and get educated like him. I learnt that Noor Afreen will get a scholarship till she completes her PUC. But I had decided to allow her to study whatever she wants, even before learning about the scholarship. I was impressed by the doctor, who conducted the delivery, and I dream of making my daughter a doctor. The scheme will help me realise that dream,” she said.

When a Job Disappears, So Does the Health Care

ASHLAND, Ohio — As jobless numbers reach levels not seen in 25 years, another crisis is unfolding for millions of people who lost their health insurance along with their jobs, joining the ranks of the uninsured.

The crisis is on display here. Starla D. Darling, 27, was pregnant when she learned that her insurance coverage was about to end. She rushed to the hospital, took a medication to induce labor and then had an emergency Caesarean section, in the hope that her Blue Cross and Blue Shield plan would pay for the delivery.

Wendy R. Carter, 41, who recently lost her job and her health benefits, is struggling to pay $12,942 in bills for a partial hysterectomy at a local hospital. Her daughter, Betsy A. Carter, 19, has pain in her lower right jaw, where a wisdom tooth is growing in. But she has not seen a dentist because she has no health insurance.

Ms. Darling and Wendy Carter are among 275 people who worked at an Archway cookie factory here in north central Ohio. The company provided excellent health benefits. But the plant shut down abruptly this fall, leaving workers without coverage, like millions of people battered by the worst economic crisis since the Depression.

About 10.3 million Americans were unemployed in November, according to the Bureau of Labor Statistics. The number of unemployed has increased by 2.8 million, or 36 percent, since January of this year, and by 4.3 million, or 71 percent, since January 2001.

Most people are covered through the workplace, so when they lose their jobs, they lose their health benefits. On average, for each jobless worker who has lost insurance, at least one child or spouse covered under the same policy has also lost protection, public health experts said.

Expanding access to health insurance, with federal subsidies, was a priority for President-elect Barack Obama and the new Democratic Congress. The increase in the ranks of the uninsured, including middle-class families with strong ties to the work force, adds urgency to their efforts.

“This shows why — no matter how bad the condition of the economy — we can’t delay pursuing comprehensive health care,” said Senator Sherrod Brown, Democrat of Ohio. “There are too many victims who are innocent of anything but working at the wrong place at the wrong time.”

Some parts of the federal safety net are more responsive to economic distress. The number of people on food stamps set a record in September, with 31.6 million people receiving benefits, up by two million in one month.

Nearly 4.4 million people are receiving unemployment insurance benefits, an increase of 60 percent in the past year. But more than half of unemployed workers are not receiving help because they do not qualify or have exhausted their benefits.

About 1.7 million families receive cash under the main federal-state welfare program, little changed from a year earlier. Welfare serves about 4 of 10 eligible families and fewer than one in four poor children.

In a letter dated Oct. 3, Archway told workers that their jobs would be eliminated, and their insurance terminated on Oct. 6, because of “unforeseeable business circumstances.” The company, owned by a private equity firm based in Greenwich, Conn., filed a petition for relief under Chapter 11 of the Bankruptcy Code.

Archway workers typically made $13 to $20 an hour. To save money in a tough economy, they are canceling appointments with doctors and dentists, putting off surgery, and going without prescription medicines for themselves and their children.

Archway cited “the challenging economic environment” as a reason for closing.

“We have been operating at a loss due largely to the significant increases in raw material costs, such as flour, butter, sugar and dairy, and the record high fuel costs across the country,” the company said.

At this time of year, the Archway plant would usually be bustling as employees worked overtime to make Christmas cookies. This year the plant is silent. The aromas of cinnamon and licorice are missing. More than 40 trailers sit in the parking lot with nothing to haul.

In the weeks before it filed for bankruptcy protection, Archway apparently fell behind in paying for its employee health plan. In its bankruptcy filing, Archway said it owed more than $700,000 to Blue Cross and Blue Shield of Illinois, one of its largest creditors.

Richard D. Jackson, 53, was an oven operator at the bakery for 30 years. Mr. Jackson and his two daughters often used the Archway health plan to pay for doctor’s visits, imaging, surgery and medicines. Now that he has no insurance, he takes his Effexor antidepressant pills every other day, rather than daily, as prescribed.

Another former Archway employee, Jeffrey D. Austen, 50, said he had canceled shoulder surgery scheduled for Oct. 13 at the Cleveland Clinic because he had no way to pay for it.

“I had already lined up an orthopedic surgeon and an anesthesiologist,” Mr. Austen said.

In mid-October, Janet M. Esbenshade, 37, who had been a packer at the Archway plant, began to notice that her vision was blurred. “My eyes were burning, itching and watery,” Ms. Esbenshade said. “Pus was oozing out. If I had had insurance, I would have gone to an eye doctor right away.”

She waited two weeks. The infection became worse. She went to the hospital on Oct. 26. Doctors found that she had keratitis, a painful condition that she may have picked up from an old pair of contact lenses. They prescribed antibiotics, which have cleared up the infection.

Ms. Esbenshade has two daughters, ages 6 and 10, with asthma. She has explained to them why “we are not Christmas shopping this year — unless, by some miracle, Mommy goes back to work and gets a paycheck.”

She said she had told the girls, “I would rather you stay out of the hospital and take your medication than buy you a little toy right now because I think your health is more important.”