Fundraising in memory of Amber Phillpott, who died from a rare form of childhood leukaemia, has led to an important breakthrough in the fight against the disease

IN 2009, James Phillpott launched a music festival to raise funds for Oxford Children’s Hospital after a friend’s son received life-saving care for a congenital heart defect.

The boy went on to make a full recovery.

But at the time, the Culham Laboratory contracts manager had no idea that his own daughter Amber would one day become ill herself.

She was diagnosed with acute myeloid leukaemia (AML), a malignant disease of the bone marrow, in 2010, and died aged 18 months the following year.

She would have been four last Thursday.

Despite the tragedy, Mr Phillpott, 38, was determined to do all he could to help other families by raising as much money as possible to pay for research into the little-known disease.

Still grieving for his daughter, he set himself an ambitious target, to raise £1m in Amber’s name, and launched The Amber Phillpott Trust.

To date, the Yeah Baby! music festival has raised £37,000 for various charities, and £12,000 of that total has gone to The Amber Phillpott Trust, which has brought in a total of £60,000.

And the money is starting to make a difference, paying for vital research which has already made crucial discoveries.

“Amber was clearly too young to die, but her type of leukaemia is rare, and the treatment for it has not moved on in the past 20 years,” said Mr Phillpott, who lives in Abingdon with wife Fleur, daughter Daisy, six, and baby son Barney, who is two months old.

“About 80 kids a year get AML, but the survival rate is only 6.5 out of 10,” he said.

“I was hurting so much when she lost her life that I wanted to do something about it and I wanted her name to live on.

“I wanted to raise £1m in her name.

“That’s 25 grand a year for 40 years.”

After Amber became ill, Dr Francis Mussai visited the family after she had been treated at the John Radcliffe Hospital in Oxford.

The medical researcher was based at Oxford University and now works at Birmingham University.

Dr Mussai asked if he could take a sample of Amber’s blood, which was sent for experimental testing.

Money from the trust is helping to support research.

And the results of the tests, according to Dr Mussai, could point towards a completely new way of targeting AML.

He said: “We are extremely excited about this new development and are working hard on the next stage.

“We are so thankful to all the people who have done amazing things in Amber’s name to raise money to aid the research. It really does make a difference and it is extremely humbling for the research team to hear about the dedication and effort that has gone into raising this money.”

During testing of Amber’s blood, it was found that a chemical process was weakening the immune defence system and that this was worthy of further investigation.

After the Amber Phillpott Trust was established, it donated funds to Oxford University to buy a spectrometer, which detects minute colour changes in blood or any other liquid.

This allowed researchers, including Dr Mussai, to investigate the mechanisms by which AML cells interact with the immune system.

The mechanisms they are studying include the release of chemicals from AML cells, and the depletion of essential nutrients from the immune system.

The team at Oxford and Birmingham has made significant progress in understanding how AML can dampen the immune response, and has published the initial results in a paper in BLOOD, the Journal of the American Society of Hematology.

The trust has since made a donation to Birmingham University so that further research can be carried out to follow up the initial results.

“It was Amber’s blood that led Frank to make his discoveries, and the trust paid £10,000 for the spectrometer,” said Mr Phillpott.

“I am particularly pleased with this research as it’s another step towards doing something about AML.”

The trust’s latest donation is being used to buy essential laboratory equipment and chemicals for analysing AML samples.

Researchers are studying how a nutrient called arginine, part of the everyday diet, interacts with the leukaemic cell.

The laboratory group led by Dr Mussai is investigating how arginine is used by AML cells for critical cell processes that keep AML cells alive.

They are trying to discover how the AML cells take up arginine from their surroundings, and whether blocking AML cells from using arginine will make them more sensitive to standard chemotherapy drugs.

The trust is also getting support from lots of people trying to raise cash. One Abingdon mum supporting the Phillpotts is Tomomi Manthey, 37, of John Jones Close, whose son Ace, eight, suffered acute lymphoblastic leukaemia when he was three and needed three-and-a-half years of chemotherapy before he recovered.

Daughter Sky, 11, and Ace played a half-hour set of songs in Abingdon’s Market Place to raise funds for Yeah Baby! this year.

Mrs Manthey said: “We wanted to do what we could to raise some money.”

A new baby keeps all families busy, and their baby son Barney is no different. But Mr Phillpott is determined to continue raising funds for the Amber Phillpott Trust.

He and his family took time out from fundraising on Thursday to remember Amber on her birthday, before they gathered for a birthday tea at Ask restaurant in Abingdon.

“We still miss Amber’s love,” he said.

“But Barney comes with his own love and that goes some of the way to easing the pain of losing Amber.”

He added: “People keep coming up with new ideas all the time to raise money. Someone called the other day and said he was planning to run 100 miles for our charity.

“The generosity of fundraisers has enabled us to pay for research that is already delivering results, and I am sure this will make people feel they have given to a worthwhile cause.”

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