On Thursday 27 June we learned that Lilya, sadly, died. She was surrounded by her family, in hospital.
Henny Braund, Chief Executive at Anthony Nolan says: ‘We are all incredibly sad to hear that Lilya died, after receiving her stem cell transplant.
‘By speaking and blogging so openly about her experiences and calling on people to join the Anthony Nolan stem cell register, Lilya displayed maturity and courage that defied her age. She has inspired countless people to join the register and will no doubt save others, in the future, thanks to her appeal.
‘Our thoughts are with Lilya’s loved ones, particularly her family Helen, Martin, Micah, Archie and Alfie, who we will support however they need us.’
#findamatchforLilya calls on people across the UK to join the Anthony Nolan register
A 12-year-old from Nottingham is calling on people across the UK to join the Anthony Nolan register and give hope to others, like her, in need of lifesaving stem cell transplants.
Lilya Coleman Jones’ father, Martin Coleman, took her to the GP in November 2018 because she had been feeling unwell. Tests revealed Lilya had acute lymphoblastic leukaemia (ETP-ALL) a rare and aggressive form of blood cancer.
Lilya, who also likes to be called Lil, experienced a number of infections including sepsis, which meant she spent three months in hospital, including Christmas Eve and Christmas Day in intensive care. She is currently receiving treatment at Queen’s Medical Centre’s Nottingham Children’s Hospital.
Lilya Coleman Jones
Lilya, who has three chickens, says: ‘I was really excited about Christmas and had helped to decorate the tree. I felt really ill so I was glad I was in hospital but it was a shame to miss out. I did have a special Christmas a month later. Mum would come in with presents over the course of a week or two and I would open them up.’
Martin says: ‘It’s really hard to avoid falling into clichés but with Lilya’s diagnosis and treatment so far, I’ve learned they are all true: I felt the bottom of the world had dropped out from under me.
‘I’ve felt it all – from being dizzy with the surge of emotions and as I told people at the time suddenly nothing else mattered. All of my focus and energy needed to be on one thing which was my family, especially Lilya.’
Lilya has recently returned to the family home and needs a stem cell transplant: cells from a healthy person, with the same tissue type, to replace and repair her own damaged cells. With her family Lilya is campaigning to raise awareness of blood cancer charity Anthony Nolan, which finds and matches donors, of the correct tissue types, with patients who need stem cell transplants.
Lilya says: ‘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.’
Helen Jones, Lilya’s mother, says: We have been home for the last two weeks which means we can have some good days. The campaign has all come from Lilya. Friends had suggested it and because there are lots of things Lilya loves doing that she can’t at the moment, her face lit up when I asked her about it. She said “I know it might not help me, but it might help somebody else”. In the middle of everything she’s having to deal with, this is what she is thinking about and I’m just so proud.’
The family are taking each day as it comes. Helen says: ‘We will be travelling up to the specialist hospital in Leeds, so I am waiting to see what they say. It’s not helpful for me as a mum to be on an emotional roller coaster. I feel I just need to be ready for whatever challenge is presented to me.’
Henny Braund, Chief Executive of Anthony Nolan says: ‘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 anthonynolan.org/lilya.’
Dr 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."