We thought our little girl had just slept badly – now she's been given months to live | The Sun

WHEN little Lily Harley started to walk strangely with a tilted head, her parents just thought she had slept badly.

But the issue continued, with her parents, Josh and Emily taking her to the hospital.


There, they were initially reassured that it was nothing to worry about and that it was likely she had sprained her neck.

Now her parents have been told she has just months to live after medics revealed the youngster was suffering with cancer.

Her symptoms had first started in December 2021, and just months later her parents' were told that the three-year-old had a brain tumour.

Following the diagnosis, Lily was sent straight to Sheffield Children's hospital, where she had a ten hour operation to remove the tumour.

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The family were told they would need to go abroad for treatment and early last year, they spent six weeks in a European city, where Lily had 32 sessions of treatment.

Dad Josh said chemotherapy is awful for anyone, but added that his little girl 'coped really well'.

In September 2022, Lily had a check up, giving her the all clear. However, just last week she had the same checkup, with the family now being told something different.

The MRI had picked up new tumours at the base of her neck, on her chest and in her brain fluid.

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Posting on a GoFundMe page, the family said: "Lily has been given months to live. This is the most heartbreaking outcome and words cannot describe how unfair and cruel life really is."

Josh said that when they were given the news, they were devastated.

"Me being a bloke, it sort of went in one ear and out the other, I was trying to listen to what we were being told.

"The hardest part of it all has been telling our family though. When you get the news you try to digest it and you can cope with that, but telling everyone was horrible, especially as we thought the MRI would come back clear," dad Josh told GrimsbyLive.

The signs and symptoms of ependymoma you need to know

The symptoms of ependymoma depend on where the tumour is located and whether there is increased pressure in the head, medics at the Royal Marsden state.

This is called raised intracranial pressure. Common symptoms may include:

  1. nausea and vomiting
  2. lethargy and irritability
  3. headaches
  4. clumsiness
  5. difficulty with tasks like handwriting
  6. gradual decline in school performance
  7. changes in personality and behaviour
  8. altered way of walking.

If it spreads or is located in the spinal cord then patients might also experience:

  • back pain
  • difficulty walking
  • problems with bowel and bladder control.

Lily has Grade 3, Ependymoma, a type of brain cancer which has a high rate of recurrence in the brain and spin.

Experts at the Royal Marsden state that it's a rare illness, with less than 50 children a year developing the condition.

It represents around 10 per cent of all childhood brain and spinal cord tumours, they said.

Josh said he and Emily have spoken about life without their little girl and how they will cope.

"We both said that when she goes there is just no chance we can stay here. We've got no other kids which makes the whole thing even more heart breaking," he added.

He added that it will take time getting used to her not being around, especially as she will no longer be there waiting for him after work.

The family, from Louth, Lincolnshire, have now set up a GoFundMe page in order to make the time Lily has left as special as possible.

Posting on the page the family said they want to take Lily to Disneyland while she is still her happy bubbly self.

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"Lily will absolutely adore Disney and we hope to give her the most magical experience any little girl can dream of. She deserves to have the best time and experience the true magic."

The family are aiming to raise £50,000.


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