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Friday, May 17, 2019

12-year-old Nottingham leukaemia patient hopes to save lives with plea for more bone marrow donors

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A 12-year-old Nottingham leukaemia patient receiving care and treatment at Queen’s Medical Centre’s Nottingham Children’s Hospital is championing a campaign to raise awareness of how to donate bone marrow.

Life changed very quickly for Lilya Coleman Jones, from Nottingham, and her family at the end of 2018. After being unwell for a few weeks, 12-year-old Lilya was diagnosed with Acute Lymphoblastic Leukaemia (ETP-ALL), an aggressive form of the disease. Lilya immediately started treatment, but suffered a significant set- back when she contracted sepsis, which meant she spent much of Christmas on the Paediatric Critical Care Unit at QMC, where her life was saved.

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Lilya, a pupil at Wollaton’s Fernwood School, is now waiting for a bone marrow transplant. Her younger brother was prepared to be a donor for his sister, but sadly, isn’t a match. QMC Consultants have now turned to an international bone marrow register search, but are yet to find a match. The search continues, with Lilya leading the charge.

Lilya, who is currently under the care of Dr Eleanor Jesky at the Nottingham Children’s Hospital, is this week starting her fifteenth week of chemotherapy.

Lilya and her family are now campaigning to raise awareness of how to donate bone marrow to encourage more donors to come forward, to save more lives.

Lilya said: “Whilst there is a very slim chance that this might help me, what I really want to do is help other people in a similar situation. It’s really raising my spirits seeing how many people have committed to becoming donors as a result of this campaign.”

Lilya’s mum, Helen Jones, who featured prominently in Episode Five of last year’s BBC ‘Hospital’ documentary when she was Director of Adult Social Services for Nottingham City Council, said: “QMC has been Lilya’s home for much of the last four months, as she has received care on Ward E39 as her body has fought this and other subsequent infections. The care Lilya has received on Intensive Care and E39 has been sensitive, responsive and caring – we would like to thank the fantastic staff for their outstanding care for Lilya which is ongoing.”

Every 14 minutes, someone is diagnosed with blood cancer. Over 2,000 people in the UK are in need of a bone marrow or stem cell transplant every year. 75% of UK patients won’t find a matching donor in their families. They turn to Anthony Nolan to find them an unrelated donor, who give a chance of life to three people every day.

Dr Eleanor Jesky, Consultant Paediatric Haematologist at Nottingham University Hospitals NHS Trust, said with bone marrow donors it is always about having a choice from as many people as possible.

“A proportion of our patients with leukaemia require a bone marrow transplant to offer them the best chance of cure” she explained.

“While some patients will be in the position of having a sibling who is a suitable match others are reliant on finding an unrelated donor. The chance of finding a donor is increased the more volunteer adults who are registered on the international donor panels, enabling more patients to access this potentially life-saving treatment option.”

“It is a worldwide register – the person who needs treatment here in Nottingham, may be a match to a donor in Europe, America, Asia – anywhere in the world.

“So we encourage anyone who would be prepared to potentially help a stranger to sign-up for the register to see if they can help.”

Anyone who is already registered as a blood donor can become part of the marrow register, and a small sample of blood is taken at a donation session.

The bone marrow can be used to treat a wide-range of cancers, as well as help rebuild damaged immune systems.

Henny Braund, Chief Executive of Anthony Nolan, said: “That Lilya has chosen to share her personal experience in this way, as she receives treatment, is a generous and extraordinary thing. Every day, five people will start their search for a matching stranger who might save their life. Each new donor Lilya and her family inspires to join the Anthony Nolan register, could mean a second chance for someone in need of a lifesaving stem cell transplant.

“We’re particularly calling on young men aged 16-30 to consider joining the Anthony Nolan register as they provide 50% of all stem cell donations but make up just 18% of our register. I’d urge everybody in good general health to find out more at www.anthonynolan.org/lilya.”

For more information about Lilya’s campaign visit https://m.facebook.com/findamatchforLilya/ and follow #findamatchforLilya on Twitter. More information about Bone Marrow Transplants can be found via http://www.anthonynolan.org.

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