THE family of a 14-year-old had their life turned upside down when her suspected case of coronavirus turned out to be an extremely rare form of leukaemia.

Ellie, who lives with her family in Silloth, was diagnosed with JMML - an extremely rare form of leukaemia - on April 21 after the family sought medical help when her condition began to deteriorate.

Juvenile myelomonocytic leukaemia is a rare cancer of the blood that usually affects children under the age of four. It leads to an excessive production of the monocyte white blood cells in the bone marrow, which infiltrate other organs including the spleen, liver and lungs.

“She has been poorly for a couple of years on and off, but we put it down to tonsillitis and things like that," explained mum Kellymarie Higgins.

"At the start of lockdown, she was short of breath, but this was put down to Covid.

“We rang the doctors and told them we need someone to see her, she’s getting worse. The doctor sent her straight up to A&E. We took her through and she collapsed in the doors.

“They took her to do a few blood tests and told us there was an ambulance outside to take us to Newcastle.

“We thought it was maybe a stomach ulcer or something. It went from one morning wondering about whether she had Covid to being in the Newcastle cancer ward and receiving blood transfusions in a matter of hours."

The social distancing restrictions in place across the UK to contain the spread of coronavirus mean that family and friends have been unable to visit Ellie.

Moved by a desire to do something to help, four of Ellie's friends, who are all in year 10 at Solway Community Technology College - Darci Slack, Ella Thompson, Jemma Wilson and Charlotte Reeves - decided to walk 100 miles during the month of May to raise money for the Teenage Cancer Trust, which supports the RVI (Royal Victoria Infirmary) teen cancer ward in Newcastle where she is being treated.

“It was all quite a shock, and all happened very quick," continued Kellymarie.

"Her close friends felt they couldn’t do anything because of the lockdown.

“Ellie had treatment done at the cancer ward in Newcastle and you can’t have family or friends with us, so this is a thank you to them and an attempt to raise some funds."

Ellie is currently at home with mum Kellymarie, partner John Vailionis, nine-year-old brother Cole and John's daughter Ivie, aged four.

It is expected that the challenge - which is nearing completion - will have raised more than £3,000 once finished.

It has been a difficult time for the whole family, according to Kellymarie.

“Some days she is struggling. I think she is more bothered about her hair. She has lost so much weight.

“Some days we can’t get her out of bed, and she can’t walk very far. It’s been a bit difficult; it’s all starting to set in now. It’s been five or six weeks since she was diagnosed, it’s all been very quick," Kellymarie said.

Ellie has now been placed on a waiting list for a bone marrow transplant,

"We need to find a match as quickly as we can, for the time being, she needs to have intensive chemotherapy to keep it at bay," explained Kellymarie.

“JMML leukaemia is generally found in younger children, it’s extremely rare in Ellie’s age group.”

Following the transplant, a five-year treatment plan will be started for Ellie.

“Ellie has taken everything in her stride, she is more worried about everyone else. She is at legal age, so doctors have to be honest and open with her.

“She asks the more difficult questions that she wants to know, she wants to be prepared. Asking the questions that as a mum it is hard to hear. It’s very matter of fact.

“She gets a bit angry that she can’t do things everyone else can, she thinks it is not fair it is happening to her when she hasn’t done anything wrong."

To donate to the fundraiser, visit