'Never give up hope and please join the register' says 11-year-old in need of stem cell donor match

An appeal has gone out to help an 11-year-old girl who needs a stem cell transplant from a stranger, to give her a second chance of life.

Arya was diagnosed with a rare blood disorder. But following a diagnosis of aplastic anaemia, a serious condition that occurs when the body stops producing enough new blood cells, she will also be starting immunosuppressant treatment. 

This means her immune system isn’t working as it should, putting her at a greater risk of infections.

To cure her aplastic anaemia Arya needs a lifesaving stem cell transplant. Blood cancer charity Antony Nolan is searching the worldwide stem cell registers for a donor whose tissue type matches Arya’s and who is willing to donate their stem cells to help her live a normal life again. 

However, the search for a perfect match is difficult for people like Arya, who is half Indian, with mixed ethnicity so she is sharing her story with Anthony Nolan in order to raise awareness of the need for more people of mixed race to join the stem cell register.

She said, “‘They said it would be hard to find a donor for me because of my ethnicity but it isn’t impossible. There is hope.”

The best possible match for Arya is most likely to have the same background or mix of ethnicities. Currently, people with mixed Asian or other minority backgrounds have a 20% chance of finding a match from an unrelated donor, compared with nearly 70% for people with white, north European heritage.

Arya was diagnosed earlier this year and is receiving treatment at St Mary’s Hospital, London. 
She added, ‘When I first became unwell, I remember getting a stomach ache. At first it felt like a stitch but the pain didn’t go away so I had more tests.’

These tests revealed something more serious. Arya’s mum Brundha recalls: “Arya has always been fit and healthy, but life changed very quickly; all of a sudden we were talking to doctors about aplastic anaemia and Arya has had to stop many of the things she liked doing because her platelets, the tiny blood cells that help your body form clots, were low.”

The family were given news of the treatment Arya would need to undergo and the need for a suitable donor. 
As the search continues, waiting for a match for Arya has inspired the Lloyd family to share their story. Their aim is to raise awareness of the need for more stem cell donors of mixed ethnicities to join the Anthony Nolan register and so increase the likelihood of finding a match for young people like Arya.

Brundha said: ‘Because Arya is of mixed race, it was always unlikely we would find a match quickly. We have therefore started this appeal because we don’t want to give up hope. It’s a waiting game, but there could be someone out there who is a match. We also understand that younger people make better matches, so we would like to do all we can to make this more widely known.’

Arya’s Consultant, Professor Josu de la Fuente, who is a Consultant Haematologist and Director of the Paediatric Bone Marrow Transplant Programme at Imperial College Healthcare in London said ‘A well matched donor offers the best opportunity for Arya to establish normal blood production long-term and not to worry about the future. 

“I will urge anyone, but particularly those of mixed ethnicity to consider joining the Anthony Nolan register so that no child with blood disorders faces an uncertain future: we can all contribute and be part of the solution.’

Arya added: ‘What stands out most for me are the bone marrow biopsies and being under
general anaesthetic for the first time.’

Rebecca Pritchard leads Anthony Nolan’s work to recruit donors aged 16–30 to its stem cell register. Rebecca says: ‘Despite all she is going through, Arya is standing up to share her story in order to inspire people of mixed background to join the register. There is a potential lifesaver out there who could help her. If you’re aged 16–30 you can join the Anthony Nolan register online by completing a form and swabbing your cheeks with swabs we’ll send in the post.

‘Each time we’re told a patient is in need of a transplant we’ll check whether you’re a match for them; if you’re found to be a match you could give your stem cells to give hope to families like Arya’s.’

Brundha said, ‘We were unprepared for this and when it happens you want to know there is a source of donors for your child. That’s why we’re doing this – to highlight the need. Being on the register could have a major impact on someone else’s life. It’s such an important thing you could do without realising. 

“Families would be eternally grateful. You may never be called on, but if you are you could be a lifeline for someone. One person out there could be that person. It’s a win-win for everybody.’

Arya added: ‘The message I would like people to take away is “Never give up hope and please join the register’.

To find out more about joining the Anthony Nolan register, or to find out more about how you can support the charity click here

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