A couple from Gloucester are hoping for a Christmas miracle this year after their 14-month-old daughter was diagnosed with a rare blood cancer.
Aria was diagnosed with Juvenile myelomonocytic leukaemia (JMML), a rare cancer of the blood that affects young children. Doctors have told her parents, Mya and Stuart that she will need a stem cell transplant: cells from a healthy person, with the same tissue type, to replace her cells to cure her JMML.
Four months ago, Aria, a happy and content 14-month-old, contracted a chest infection which wouldn’t clear up. She was referred to Gloucestershire Royal Hospital for tests, which the family thought may reveal Aria had asthma. Mya and Stuart were shocked to be told that Aria needed to receive treatment for JMML.
Mya says: “We knew there was something wrong as there were so many doctors. It was a big shock because we thought it was going to be asthma. When the doctor said that it was going to be bad news, we thought ‘what’.
“As a nurse myself I knew about stem cell transplants but I didn’t know how many types of leukaemia there were. Because of my job I knew the basics – but it’s just the tip of the iceberg.”
Stuart adds: “You never think something like that it going to happen to your family. Quite early on the team started talking about a ‘stem cell transplant’. I’d heard the term bone marrow transplant before, but I didn’t realise that it would be a bag of cells that would be given to Aria via a transfusion.”
Aria contracted two infections early on, and the family prepared themselves for a long stint in hospital, as can be typical for a child undergoing treatment for JMML.
Stuart says: “Initially we were told that Aria would have a long stay in hospital but the first stay was just over a week, so we feel quite lucky. After three days, Aria seemed to impress the team – they were surprised that she was smiling, up and playing and there were lots of comments about how resilient she was.”
Aria is an only child, which means she is relying on the kindness of a stranger to give her a second chance of life. Anthony Nolan is the charity that makes lifesaving connections between people with blood cancer and incredible strangers ready to donate their stem cells. Mya and Stuart, who have been married since 2017, are working with the charity to give more people the opportunity to hear about Anthony Nolan, and support other families relying on the charity to find a matching stem cell donor.
Mya says: “Aria’s currently at home, after a period in hospital. She’s missing nursery because she is confined to the house, to minimise the risk of getting any infections.”
Stuart says: “Joining the Anthony Nolan register is something that is not going to take very long. But the act could give families more time – and massively make a difference.
Mya adds: “It’s the best gift anybody could give. Saving a life and giving a family a second chance. We thought that we could donate our stem cells to Aria, but she needs a stranger.
Aria, Mya and Stuart are being supported by family who are close by. A Facebook donate post raised over £1,000 for Anthony Nolan in 48 hours, and the family are encouraging people aged 16-30 to join the Anthony Nolan register. An event at Gloucestershire Royal Hospital on Tuesday 3 December inspired more than 70 people to join the register, and more people have pledged to join online.
Mya says:” Everybody has been very supportive and have been doing all they can for us, and to say thank you to Anthony Nolan. There’s a drive to encourage people to join the register on Tuesday, at the hospital where I work and we’re raising money.”
Rebecca Sedgwick, National Register Development Manager says: “We’re wishing Aria all the very best here, at Anthony Nolan, and are supporting Mya and Stuart as they wait for news of a match.
“By mobilising their friends and family and fundraising for Anthony Nolan they are doing an incredible thing. Each new donor they recruit could mean the chance of life for someone like Aria with blood cancer. Money raised will help pay for those donors to be tissue-typed and enable Anthony Nolan to get vital information to patients, and their families, when they need us.”
The family are wishing for good news, this Christmas. Mya says: “Aria is very excited to leave her magic key, a carrot, mince pie and a drink out for Santa Claus and his reindeer this year. Initially it was likely we were going to have to spend Christmas in hospital, but thankfully we should now be able to spend it at home.
“We are looking forward to spending quality time together over Christmas and we are lucky to have very supportive families nearby who will spend Christmas Day with us.”
Stuart adds: “Although Aria’s got to be kept away from crowded places, therefore we can’t take her to see Santa Claus for the first time, she is very lucky as two of Santa’s reindeers and their elf keepers are coming to visit her outside of our house soon.
“Both of our Christmas wishes are to find Aria’s perfect stem cell match and for her to eventually fully recover.”
Find out more about joining the stem cell register at www.anthonynolan.org/aria. Fundraising helps Anthony Nolan carry out ground-breaking research to discover the many factors that influence the success of a stem cell transplant.