WHEN Carly Surridge and her family sat down for dinner one evening, she knew something had changed with her little girl.
Carly, 32, and her partner Ben Hardy, 26, spotted that one of daughter Acacia Surridge-Hill's eyes was nearly fully closed, and her mouth was slanted to one side.
Concerned, the family rushed her to her GP where she was diagnosed with Bell's Palsy.
Bell's Palsy is an unexplained episode of facial muscle weakness or paralysis, but the family pushed for a scan and doctors found a mass on Acacia's brain.
After more tests and scans, she was diagnosed with diffuse midline glioma H3K27M in September last year.
Diffuse midline gliomas are the second most common type of primary high grade brain tumour in children, the Brain Tumour Charity says.
The six-year-old had to have gruelling radiotherapy to slow the tumours growth and Carly said that family were told their little girl had just 12 months to live, but that it would more than likely be just six months.
"In the end, she lived for 15 months from when she was first ill. She was very brave, very strong and very determined.
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"Three weeks ago they told us she had weeks to live, so we knew it was coming, but we didn't know when. She stayed at home with us and we looked after her. We didn't want to be without family and friends close by.
"She had lost all mobility and was completely paralysed. She had a special support chair called a PPod that was like her little throne. She sat in there during the day and slept in our room at night", Carly told Stoke-on-TrentLive.
On Sunday, November 28 as it was snowing outside, the Disney's Frozen fan passed away peacefully.
Her mum added: "She was always a star, shining bright, and she's still doing that now. She was adorable and so friendly. She was a wonderful girl and I am very, very proud of her. I couldn't be more proud."
Carly now says that the Crewe family will always think of Acacia when it snows and said her little girl's favourite characters had been Anna and Elsa from Frozen.
She explained that she is 'absolutely devastated' at the loss of her daughter, but is also happy that she doesn't have to go through pain anymore.
What is a diffuse midline glioma?
Diffuse midline gliomas are the second most common type of primary high grade brain tumour in children.
Experts at the Brain Tumour Charity say they are grade four tumours which usually occur in children and are less frequent in adults.
The most common signs include:
- problems with walking
- issues with balance or coordination
- weakness in the arms or legs
- difficulty controlling facial expressions
- one side of the face appearing different to the other
- speech difficulties
- issues swallowing or chewing
- double vision
- trouble controlling eye movement
The family had been raising money to take Acacia to Disneyland Paris, but sadly the little girl never made it.
She had been too unwell to travel abroad so the family instead took trips to Blackpool and Wales to see Disney on Ice.
Staff from Wistaston Academy had cycled the distance from Crewe to Disneyland Paris back in April in order to help raise funds for the little girl.
Dominique Griffiths, principal of Wistaston Academy said little Acacia would 'never be forgotten'.
He said that the little girl had shown nothing but courage since her diagnosis and that 'her infectious smile never failed to light up a room'.
The family had raised £15,000, some of which will go towards Acacia's funeral, which is set to take place on Monday.
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