By Emily Retter 1 Comment
13 Jul 2013 00:00
For most young women, turning 18 is a milestone celebrated with a huge party surrounded by pals and enjoying their first legal drink.
But Hannah Jones wanted nothing more than to blow out the candles on her chocolate cake last Sunday and spend the day quietly with her family, only too aware it was a birthday few, including herself, thought she would ever see.
At 13, she made global headlines after refusing to have a life-saving heart transplant.
Despite being told her own organ had been so badly damaged by treatment for leukaemia she could die within months without it, she was determined not to have the surgery.
Having spent her time in and out of hospital Hannah calmly told doctors she would rather live a short life in peace at home than spend a single day more away from her family.
And controversially, parents Kirsty, a former nurse, and auditor Andrew, stood by her.
Even when her local hospital applied for a High Court order to force her to have treatment, the youngster managed to convince child protection officers it should be her decision.
But, after winning her battle, a year later at 14, and on her terms, she had the transplant.
Now, four years on, Hannah is living a life she never dreamt possible.
Hannah Jones, pictured here with mum Kirsty and dad Andrew has now been denied the chance to go to Disneyland as no-one will sell her holiday insurance Resolute: Hannah aged 13 was very ill but said no to operation SWNS She says: “I’m so grateful for my transplant, and glad I decided to have it.
“It’s given me a life I didn’t expect, a chance to grow up, to follow ambitions, maybe even get married and have a family.
“I didn’t think it was possible to live like this. I’d always been so sick. It was a shock to realise how much energy a person can have.
“I remember the first time I could swing myself on the garden swing, the first time Mum could let me go to McDonald’s with my mates. I didn’t think I’d ever do those things.
“Now I’m revising for A levels, I’m planning to leave home and go to university, I’m learning to drive.
“I can dance and sing, at one time I could only watch Glee and wish I could join in. I’m determined to miss nothing.”
Hannah was five when she was diagnosed with leukaemia and spent long periods isolated in hospital.
She says: “My first memory is of clinical wards. All I wanted was to go home.”
She went into remission at seven and spent time at primary school, even starting secondary.
But her heart was so badly damaged by the treatment it began to fail.
She tried a pacemaker, but at 13 doctors told her she needed a transplant. Her reaction shocked them.
“I said no,” she says. “They were showing me photos of kids on a holiday camp who’d had transplants, they were smiling.
“But I just knew I didn’t want it. It just felt too big. The doctors left the room with my parents.
“I knew they were going to try to persuade me but I couldn’t face any more.”
And even though she was told she would die, Hannah was resolute.
Hannah Jones had a heart transplant when she was 15. She has just had her 18th birthday. Hannah with mum Kirsty Jones Happy: Hannah with mum Kirsty Jon Fuller-Rowell She adds: “Mum told me but I didn’t cry. I don’t remember her crying. I’m sure they did behind closed doors.
“She didn’t force me. I’m grateful. I can’t explain why I was so certain, I just knew.”
Hannah went home after two weeks but her parents were told child protection officers would visit to decide whether Hannah should be taken from them temporarily.
But her maturity persuaded them to leave her be. “It is difficult to believe I made that decision,” she says.
“But I overwhelmingly felt I wanted to be at home. I’d look at my siblings playing in the garden, I couldn’t join them, but just by watching I felt involved.
“We’d play Monopoly, I could eat with my family. I loved that.”
But she admits she feared death. Hannah adds: “There were nights I couldn’t sleep and I’d be scared if I did I might not wake up.”
Then, as her 14th birthday drew near something changed.
She says: “I’d started to feel more ill and it suddenly felt real that this might be my last birthday. I wanted more.
“A week before, I told Mum but I was so scared they’d come and take me away.
“We made a pact not to tell anyone until after my party.”
Hannah Jones in hospital Hospital: After Hannah decided to go ahead Collect Hannah then went straight to hospital.
She had developed a kidney infection and seriously ill, did not go home.
“With her life hanging in the balance she jumped to the front of the transplant list.
Within days she was in an ambulance racing to Great Ormond Street Hospital for surgery – but only got half-way.
She recalls: “The sirens stopped. The heart wasn’t right. I felt so disappointed. I knew more than ever then I wanted it.”
A week later a second chance came. This time Hannah was flown by helicopter. The transplant went ahead but her recovery was not straight forward.
Because the heart was too large for her chest, she spent two weeks in intensive care.
“Every time they tried to close my chest it stopped beating,” she says.
“Mum says I had a kind of window there, with what looked like cling film over the top. She could see my heart beating.”
Recovery was slow but each small milestone was momentous.
Hannah Jones – 16th birthday Party: Larking around with balloons on her 16th birthday Collect Hannah adds: “Eventually I could walk to the bathroom by myself, and I remember standing on the bed to reach something and thinking, ‘That’s amazing.’”
She went back to school 18 months later and managed to achieve three GCSEs – later taking six more.
“I remember the first time Mum left me with my friends on my own,” she says.
“We went to McDonald’s and I felt freedom for the first time. Mum watched me walk away and it was frightening but I knew I had to be independent.”
Now Hannah is studying A levels in Drama and Theatre, English Literature and History at college.
She loves acting and dancing and has starred in Joseph and his Technicolour Dreamcoat.
Hannah likes shopping with mates and hanging out. She had her first boyfriend last year but they split “because he was shy”.
But she says she feels different from her peers, adding: “Stuff they talk about, like who’s going to which party and who’s seeing who, seems trivial.
“I appreciate things they don’t, like being able to turn up to college every day.”
Hannah Jones going to her prom with a friend Prom: Hannah Jones all glammed up with a friend Collect Hannah, of Marden, Herefordshire, does not regret her original decision.
“I was doing what I felt was right and I would tell any 13-year-old to do the same,” she says.
While she knows the heart came from a man in Scotland, she has decided not to make contact with his family.
Hannah adds: “In a way I don’t want to think about it, sounds horrible but it’s my heart now.
“If I did speak to them I’d say thank you so much, he has given me a life.”
She still takes pills for her blood pressure and cholesterol, alongside anti-rejection drugs.
Hannah cannot walk more than half a mile. But she lets little hold her back. “I never thought I’d be dancing on stage, I love it,” she says.
And she is applying to Bath University to study English, hoping to become a teacher. She is even considering travelling before she goes.
Hannah says: “I’m excited about leaving home. It frightens me, but the point is to be independent.
“That’s what I want more than anything… to feel free.”
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