Hannah’s story

‘Hannah knew she was terminally ill and that she was going to die. That is horrible for anyone of any age, especially a teenager.’ Mum Christine Debney tells the heart-breaking story of their beautiful daughter – and how it all started with a sprained ankle.

Hannah Debney was seriously ill but no-one was listening, doctors didn’t believe what she and her parents were saying. Hannah was instead diagnosed with a mental health disorder.

She had been a ‘normal teenager’. She loved baking, dancing and meeting up with friends. But then one day she sprained her ankle and that was the moment everything changed.

“Hannah loved life,” said mum Christine. “She was a happy, normal teenager, but she then kept spraining her ankle and doctors didn’t know what was wrong with it. She had to use a wheelchair to get out and about and was also starting to get lots of other aches and pains.

“And then she started vomiting.”

At first no-one knew what was happening or why. She was admitted to hospital several times, tests were carried out, and she was discharged. They thought she may have an eating disorder or a mental health condition.

For the next 15 months, Christine said they went ‘round and round in circles’. Hannah even had bladder failure.

“In all this time she was getting thinner and weaker, and she couldn’t keep food or drink down and had to be fed by tube,” Christine said.

A teenage girl in a wheelchair outside in the sunshine
A teenage girl sits in a kitchen. She has a decorated cake on her lap

Hannah’s diagnosis and treatment

When she turned 16 she was moved to an adult ward and it was one doctor who then thought outside the box and discovered she had Hypermobile Ehlers-Danlos Syndrome, a rare connective tissue disorder.

Christine said: “As a mother I felt anger, to feel like we had wasted so much time. To be disbelieved was the hardest thing really while she was suffering.

“After being in hospital a long time Hannah received specialist treatment. Once discharged we then tried to live life as best as we could. We went to Cadbury’s World and did lots of things we had missed out on for so long. Hannah managed to get to college and she wanted to be a nurse, and she even learned to drive in a specially adapted car.”

Sadly after several bouts of sepsis, becoming bedridden and a lengthy hospital stay, doctors recommended not to resuscitate if the worst should happen.

That’s when Hannah made a brave and final decision.

“Hannah said she wanted to tell the doctors to stop. No-one should have to make decisions like that. It was Hannah who said she wanted to go to Acorns Children’s Hospice and to be transferred there.”

Acorns supported the whole family

“As a parent it’s devastating knowing that your child is going to die,” Christine said.

“Hannah said she wanted to tell the doctors to stop. No-one should have to make decisions like that. It was Hannah who said she wanted to go to Acorns Children’s Hospice and to be transferred there.”

Hannah spent just 15 days at Acorns and was the ‘bravest person’ her mum has ever known.

“Acorns was amazing,” Christine said. “They allowed us as a family to be together during her final days. Hannah knew her fate and she was able to talk about it and she was very brave. She was totally remarkable, right up until the last moment.

“The nurses were there, not just for Hannah, but for us as a whole family. Although we knew what was going to happen, Acorns was such a happy place and allowed us to make so many wonderful memories together.”

Acorns put on a beach party for Hannah, organised Shetland ponies to come and see her, and even bought her a Slush Puppy machine for her room.

A teenage girl sits on a bed. She has a tube into her nose and a medical wristband on. She is smiling
A lady makes a heart sign with her hand and a silver cast of another hand
Acorns helped make an everlasting cast of Hannah’s hand so her mum Christine could hold her hand for always.

Then they asked Hannah if she wanted to make a hand cast. She made the shape of a heart – and that has helped to inspire the Hannah’s Hearts appeal at Acorns, to remember a remarkable teenager and to raise awareness of the vital work the charity does in caring for children with life limiting or life threatening conditions.

“You can just see how relaxed Hannah was, and how happy she was to be at Acorns,” Christine said. “It’s upsetting to know you’re going to go there and you’re going to die, but at the end of the day, to go to Acorns was what she wanted.”

Hannah was just 17-years-old when she died.

Before she died, Hannah made mum Christine, dad Andrew and sister Charlotte promise to live their lives to the full.

“We’re going to do that,” Christine added. “She wanted us to enjoy life as best as we possibly can, because that’s what she tried to do as well.

“But believe me, that’s going to be difficult because we all miss her so very much.”