The family of a brave six-year-old girl with a rare inherited disease have told of their devastation after she was placed on end of life care.
Isla Landry was diagnosed with Niemann-Pick type c in 2019, the Liverpool Echo reports. The condition - which affects one in 150,000 people - affects the body's ability to process fat within the cells, which wither and die over time, affecting the brain, nerves, liver, spleen, bone marrow and lungs.
When she was first diagnosed, doctors told her family that she would tragically not live beyond her 13th birthday. But now, after three years fighting the disease, Isla has been placed on palliative care.
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Her parents, who said they 'know what is coming', have been told to make as many happy memories with her as they can. They said she now 'can't stand up' and has to eat through a tube.
Her dad Darren, 40, from Netherton in Merseyside, said: "The disease has taken over Isla's brain so much she has lost the ability to walk. She has lost so much strength she can't put one foot in front of the other, and can't stand up.
"She's not able to eat by mouth, so she's on a tube that goes straight to her stomach. We have come to the point where we have touched base with palliative care, and they're taking over for however long that may be.
"A few months ago, Isla was given a maximum of six years. But when we spoke to the palliative care team on Friday, they said this was a very optimistic outlook.
"She has regressed so much. Time is of the essence now. We need to make as much memories as we can while we have the chance."
Isla was allowed to go home from Alder Hey Children's Hospital three weeks ago, and is now receiving round-the-clock care from her dad and step-mum, Katie Kelleher. It is believed the family may have less than two years to make the most of their time together.
A fund-raiser to create a ground-floor living room and walk-in shower for the six-year-old has raised more than £7,500 so far. Katie, 37, said: "Some days it's like it's not happening.
"Isla, even though she's regressing and we're seeing how much she's struggling, she's becoming more unaware of what's going on around her. She'll give us smiles and be watching telly, and you just forget.
"And then palliative care come round and it all hits home. We'll have days where we're just knocked off our feet. Then we'll have days where we're up and she's smiling and it doesn't feel real. It's just a rollercoaster of emotions.
"Watching Isla's regression is devastating, but she's still here giving us her smiles. We know what's going to come in the future.
"We know what's coming. But now we have to try and be positive and do everything we can while we still can."
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