09 March 2024 , 17:56
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Shirley Nolan was a mother who did not give up the fight. When doctors in Australia diagnosed her baby son Anthony with the rare blood disorder Wiskott-Aldrich Syndrome in 1971 and said he couldn’t be cured, she moved back to her native England to seek treatment.
When Anthony needed a bone marrow transplant and no family members were a match, Shirley began an appeal for potential donors. Her campaign was so effective that in 1974, the Anthony Nolan Register was born, with 300,000 people volunteering to be tested over the next few years.
Sadly, no match could be found for Anthony and he died aged seven in 1979. But Shirley’s incredible initiative is still going strong, having already matched 22,000 people for lifesaving treatment as the register celebrates its half century this year.
In that time the science has moved on. In 90 per cent of cases, stem cells are taken straight from the blood, through peripheral blood stem cell collection (PBSC). Stem cells collected directly from the bone marrow in your hip bone, while under general anaesthetic, make up just 10per cent. Anthony Nolan also has a research centre, umbilical cord bank and specialist nurses.
But the goal of the charity, now simply known as Anthony Nolan, remains the same – connecting those in desperate need with strangers willing to help them.
Baby boy has spent his life in hospital as doctors are 'scared' to discharge him
As Shirley, who died in 2002, said when receiving her OBE in 2000: “My greatest reward has always been knowing that my little boy did not die in vain.”
Here, three mothers share their varying experiences of having children seeking donors through the register.
Zara with her mumWhen Zara Kundra, from Basingstoke, started developing bruises in 2019 aged six, mum Taruna and dad Vikas, both 42, assumed they were from playing at school. But when Zara, now 11, started getting frequent coughs, colds and puffy eyelids, Taruna knew it was time to seek answers.
“Luck took me straight to a paediatrician who did some bloods – the bloods came back and we got a call at half eight at night saying to take her to hospital in the morning,” says Tarauna.
“Zara’s blood showed 10 per cent blasts (abnormal immature white blood cells that can be a sign of leukaemia) and we were lucky to find out when we did. By the time they did bone marrow aspiration she was at 50 per cent and we were told it was acute myeloid leukaemia (AML), which is fast spreading – very rare in kids.
“The chemo is very intense, she was admitted to hospital immediately and stayed for seven months. It had a huge impact on our family life. Zara’s younger brother, Samar, was turning five when she was diagnosed and stayed at home with my husbandI have no memory of what happened to my son for the first 20days, I was in a state of shock. Five years down the line I cry about that.
“Two years later, Zara relapsed. She needed even more aggressive chemo and a bone marrow transplant. This time the family was split up for a year, I could go weeks without seeing Samar because of Covid and Zara’s immunity. Even in a worldwide search there was no donor match. Her transplant, that Anthony Nolan arranged for us, came from the US, from the cord blood of a child born in 2013, but it was a six/eight match, which is not perfect.
Taruna, Zara, Samar and Vikas“Ideally a donor of Asian heritage is best for an Asian child and it’s hard to find donors in the Asian group as there’s a lack of awareness. With a mismatch, there’s a chance to develop Graft versus Host Disease (GvHD). Zara had very acute and chronic GvHD – she was in constant pain, bleeding from her gut for months and couldn’t eat. Morphine couldn’t control it. There are so many potential side effects I could go crazy thinking about what’s going to happen next because of the drugs they gave her to save her.
“Zara’s now 11. She’s doing well at school but missed out on a lot and her confidence has been dented. Her hair still hasn’t recovered from the chemo and the experience has been hard. But we are grateful. You follow other journeys and we know people who are still struggling. I do hope one day I’ll get a chance to say a proper thank you to the donor. I would be speechless. They saved my child’s life.
“I am eternally grateful to the family, and to the mother, who decided to donate.”
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Ava and MarieWhen Ava Stark was three and very ill with severe aplastic anaemia, her mum Marie, 41, launched a desperate search for a donor that went global. Now 11, Ava, from Fife, has been able to thank the stranger from America who saved her life
“As a baby, Ava would pick up every bug going,” recalls Marie. “Whenever she bumped herself, she’d get a massive bruise. By October 2015, she was so pale, she wasn’t walking properly. It’s obvious looking back at photographs that she was dying.
“But doctors kept telling us it was due to her body getting battered by all these infections. It was so frustrating. One night I went to sleep with Ava in my bed and woke up to find a blood clot had come out of her nose. I didn’t know it was because of platelets but I was determined to take her to the doctors and not leave until we had an answer.
“The next morning, I left her with my mum and raced to work, planning to make my excuses, get out and go straight to the doctors. But while I was out, I got a hysterical call from my mum – Ava had been sick and there was blood everywhere. An ambulance was blue lighting her to hospital.
“Eventually, Ava was diagnosed with idiopathic bone marrow failure then, because some of her symptoms didn’t fit, they changed it to severe aplastic anaemia.
“She had a blood transfusion – I went home to gather some stuff and when I walked back into the ward her skin was back to its normal pink colour and she was sitting on my mum’s knee eating toast.
Ava's first day of school“She was having red cell and platelet transfusions as often as once a week, but transfusion dependency is not a long-term solution – your body will eventually start to reject it. She needed a bone marrow transplant.
“When the specialist doctor told us there wasn’t a match for Ava on the register, it was one of the first times I’d cried since the diagnosis.
“I asked how long she’d have without a transplant. They said maybe a couple of months. So we started a campaign, spoke to the Daily Record and it went global – more than 80,000 people signed up to the register. Ava got her transplant aged three. Her recovery went really well and two years later, we were allowed to approach the donor, a lady called Juleena from America.
“When she got in contact, I was at work and just let out the biggest scream. It turns out, she’d joined the register because she’d seen Ava’s appeal, but didn’t know that her donation had actually gone to Ava. Without Juleena, and everybody else who was involved, Ava wouldn’t be here.”
Elijah Morris, who turned two on Thursday, has been in and out of hospital all his life. After a devastating diagnosis of juvenile myelomonocytic leukaemia that can only be treated with a bone marrow transplant, mum Chloe, 35, is appealing for potential donors to join the Anthony Nolan register.
“When Elijah was sixmonths old he was hospitalised with bronchiolitis – his spleen enlarged and his platelets dropped but after a lot of antibiotics, he got better,” says Chloe. “He was constantly ill with infections, coughs and colds, there wouldn’t be a period longer than two weeks when he wasn’t unwell. Doctorssaid he was just a sickly child.
“Last September we were back in hospital with respiratory syncytial virus, pneumonia and croup, less than two weeks later he had tonsillitis, then an ear infection and then he came out covered in bruises and blood spots.
“We were transferred to Noah’s Ark Children’s Hospital in Cardiff for more tests and they found monocytes in his blood – everything pointing towards leukaemia. That’s when they came to the decision that it’s Noonan Syndrome with juvenile myelomonocytic leukaemia (JMML), a rare form of leukaemia that lies dormant and only activates when Elijah is unwell – his platelets drop and it all kicks off.
Elijah and mum Chloe are desperate for a donor“Each time he’s had it, he’s become more poorly. His platelets dropped to two last time. They should be between 150 to 400. He can’t have chemotherapy because the leukaemia is not always active, so the only treatment is a bone marrow transplant.
“So now the search is on for a donor, and we’re in limbo. I’m a nurse but I haven’t been able to work since December – my job is keeping Elijah well. At the moment, he’s happy, and the boss of the house. When he’s well, he’s got so much energy and he’s happiest when he’s eating. But I am struggling a lot, thinking of what’s to come because I know life’s going to get hard.
“The more people who can sign up the better – they’re not just giving Elijah more of a chance, they are giving anyone in need more of a chance.”
“Six months ago, we were looking at going on our first family holiday. None of that can happen now. Things people take for granted are just on hold. Instead, we’re waiting for further tests and treatments, and just hoping for that call.”
- To find out how you can support Anthony Nolan’s vital work and join the register, visit anthonynolan.org