Parents' anxious vigil as brave three-year-old Evie battles leukaemia

Evie Bentley-Lee, from Clayton-le-Woods, had been struggling to recover from illnesses over several months as well as getting unexplained bruising on her body along with inflamed eyes.

She had been to the GP several times and on several courses of antibiotics since Christmas, but with no improvement in her condition, her mum and dad Keelie and James asked for blood tests to be done. The tests showed Evie had Acute Myeloid Leukemia associated with her Down Syndrome and she was diagnosed on February 20.

Now, with Evie receiving specialist treatment in the Royal Manchester Children’s Hospital, a Go Fund Me site has been set up and already raised more than £12,000 as Keelie and James are living at the hospital for the next six months and neither one can bear to leave her side.

“Evie has been toughing it out as she undergoes chemotherapy but it is very difficult to watch our baby going through this,” said Keelie.

"She is so sweet and so tiny and it is so cruel that any child has to go through this. The hospital staff have all fallen in love with her and are so proud of how she is doing and how brave she is being.

“Unfortunately my partner started a new job four weeks before Evie was diagnosed and this has proved difficult as by law he is still in his probationary period so the future of his job is uncertain. So far everyone has been incredibly generous in supporting us.

“We had been to the doctor several times but unfortunately it was not picked up on.

"We really want to raise awareness of the signs to look for, particularly and especially in children with Down Syndrome, who have a one in 100 chance of having leukaemia compared to a one in 2000 in children generally.

"It seems General Practitioners would benefit from perhaps extra training around children with Down Syndrome and how they present, as it is often different to typical children who do not have Down Syndrome.

“We would also like to raise as much money as possibly to give back to the Royal Manchester Children's Hospital and charities for Down Syndrome and Childhood Leukaemia.”

Also rooting all the way for Evie is her elder brother Reuben, 13, while the Go Fund Me page was set up by Keelie’s sister Robyn, who said: “The diagnosis alone is devastating, but what people don’t see is everything that comes with it - the emotional shock, the logistics of suddenly having to live in a hospital 70 miles away from home, the financial pressure of neither parent being able to leave Evie’s side, and therefore being unable to go to work for the foreseeable future.

“They are at the very start of a steep climb, but they are fighters and Evie - kind, funny, clever and brave little Evie - is the toughest of them all. She has already been through more in three years than most adults face in a lifetime, and she meets every challenge with a strength that puts us all to shame.”

The Go Fund Me page is at www.gofundme.com/f/support-evie-as-she-fights-acute-myeloid-leukemia while further details are on Instagram at @eviewiththeextrachromosome