Heartbroken family share final moments with 'wonderful' one-year-old daughter who died in her mother's arms

Earlier this year, Nellie was diagnosed with Krabbe Disease – a rare condition that causes progressive neurological deterioration – with parents Olivia Barker and Joe Hammond being told most babies diagnosed with the condition rarely survive to see their second birthday.

Described as a ‘little miracle’, Nellie continually beat doctors’ odds and pulled through numerous spells in hospital where her Houghton parents, who also have a one-year-old son called George, feared the worst.

On Saturday, November 7, the beautiful baby girl, who turned one on October 22, gave up her fight.

The 29-year-old dad was looking after Nellie when she became unwell at home and despite the couple’s efforts to help their daughter they knew it was her time.

“She wasn’t struggling, it was as if she didn’t want to breathe,” said Joe. “We’ve always fought for her but we knew she’d stopped fighting.

"We’d spoke about wanting her to stay at home. If you asked anyone how they would like to die it would be asleep in their own home and we couldn’t deny Nellie that.

"Liv held Nellie and she just fell asleep. She took her last breath at 10.22am with me, Liv and George beside her with Cbeebies on the telly.

"We had a plan of how we would want it to happen but we could never have planned that it that perfectly. It was just such a peaceful, beautiful ending for an absolutely wonderful little girl.

"It was just her time.”

Nellie’s brain has been donated to research at Newcastle Brain Tissue Resource to ensure her ‘legacy lives on’ in the hope she ‘can contribute towards some big changes one day’.

The couple have documented Nellie’s story to raise awareness of Krabbe disease, support charities including Krabbe UK and tell her story to help other family’s who received the same devastating diagnosis.

Joe and Olivia first thought something was wrong when Nellie was just months old. They had taken her to hospital numerous times with sickness, trouble eating and lack of head control.

But on April 3, Nellie had a seizure and was taken to University Hospital of North Durham before she was transferred to the Royal Victoria Infirmary for tests which confirmed she had Krabbe disease.

In July, Nellie was fighting for her life after her condition deteriorated following an operation but she pulled through.

Her condition worsened in September and she was in and out of hospital before her heart stopped while Joe bathed her at The Great North Children's Hospital. But, once again, Nellie came back fighting.

Following her last treatment in hospital, the devoted parents were told Nellie only had two to four weeks left to live.

"That was the last time she came home from hospital,” said Joe. "We got nearly six beautiful weeks with her. It meant everything.”

The family were able to celebrate her first birthday – something which isn’t possible for all babies diagnosed with Krabbe Disease – with a firework display. They spent Halloween together and went pumpkin picking as a family.

"We didn’t know if we’d get Christmas with her so for the first time we jumped on the bandwagon of putting the decorations up early and dressing George and Nellie in matching pyjamas. She got to see everything coming together,” said Joe.

"She was an absolutely amazing little girl and she made such a difference to a lot of people.”

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