Toddler needs £20k a month for life-saving cancer drug

The parents of a 14‑month‑old girl with an aggressive form of blood cancer have been told they will need to pay £20,000 a month to fund a groundbreaking drug that could save her life.

Melody, from Poole in Dorset, was diagnosed with acute myeloid leukaemia last April, and has not responded to chemotherapy or a bone marrow transplant.

Doctors had hoped that treatment at Great Ormond Street and Southampton hospitals would cure her - but have now been advised that their best hope is paying for a drug called Revuforj, which has been approved in the US but not in the UK.

It would likely be needed for up to two years, costing the family a total of about £500,000.

The drug is a type of menin inhibitor - which works by blocking proteins that keep cancer cells growing - and was only approved in the US in November.

Melody's parents found out about it through their own research but their consultant has written to the Medicines and Healthcare products Regulatory Agency (MHRA) to get approval for it to be imported.

This means Melody is likely to be the first person in the UK, and one of the first in Europe, to receive the treatment.

Mum and dad Rachel-Elizabeth Hewitt and Kevin Aggett have so far raised almost £50,000.

"The horrible reality is that Melody could become very poorly at any point in time," Rachel-Elizabeth told the BBC.

"We need to order the drug as soon as possible.

"We asked our consultant last week if we had the drug available in England now when would she start it - and she said she would have started it yesterday."

They initially thought Melody was suffering from a cold when she first became ill after noticing she was not her usual "smiley happy self".

"We took her to hospital and got the worst news that any parents can imagine - that she had leukaemia," Rachel-Elizabeth said.

At four months old, Melody had two rounds of intensive chemotherapy, requiring multiple blood and platelet transfusions.

She had a prolonged stay in intensive care and several weeks on a ventilator.

"Our only cure for Melody's type of leukaemia is a bone marrow transplant and we had every hope that it would work," Rachel-Elizabeth said.

She underwent surgery at Great Ormond Street Hospital but at the end of last year her parents found out that she had relapsed and a second transplant needed to be carried out in two years.

However, the parents were told she would need treatment before then to survive.

They said they were encouraged to cherish the remaining time they had left with their daughter.

"We cannot accept that this is the end of the road while there is still a chance to help our little girl," Melody's mum added.

"Her smile throughout the process has kept us going - and she's a baby. She obviously can't talk and she can't tell us how she's feeling - but she does show us how she's feeling... we can't give up on her - she wants to keep fighting."