The Anthony Nolan legacy: Three boys given hope of beating deadly blood diseases – The Mirror

By daniellenierenberg

Fifty years ago a boy was born whose brief life would bring hope for thousands of people diagnosed with blood disease.

Anthony Nolans struggle with deadly Wiskott Aldrich Syndrome and his mum Shirleys tireless campaign to save him by finding a suitable bone marrow donor moved the world.

Shirley established the worlds first register of volunteer donors here in the UK.

Tragically, she never did find a suitable match for Anthony and he died when he was seven years old.

But the register became his legacy, recruiting donors around the world. Their bone marrow and stem cells have saved more than 20,000 patients with leukaemia and other blood disorders.

Alan Corby spent six months in the next isolation room to Anthony at Westminster Childrens Hospital. Neither were expected to survive.

Alan said: Much of the time he was the only person I could see. We would talk and play card games like Twist through the glass.

When I was well enough I moved to my local hospital. I went back to see Anthony a few months later, but he had passed away.

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His life may have been short, but it had an incredible impact. Thousands have been given a second chance of life thanks to him and his mum.

On what would have been Anthonys 50th birthday, the Mirror meets three boys given hope of beating deadly blood diseases by his legacy.

Visit anthonynolan.org for more information or to join the donor register.

Georgie McAvoy knows the heartache Shirley Nolan endured searching for a donor to save her son.

Because her little boy Daniel was born with the same rare disease that killed Anthony.

Daniel, two, has Wiskott Aldrich Syndrome which prevents his blood cells from fighting infection and clotting properly. His only hope is a bone marrow transplant to reset his immune system.

A first transplant in June last year failed as Daniel body rejected his donor cells and relapsed.

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He is now preparing to undergo another gruelling course of chemotherapy, followed by a second transplant and will spend Christmas recovering in hospital.

Georgie, 31, said: We have been through so much, but Daniel is still fighting. He has coped with everything that has been thrown at him and he keeps smiling.

We are so grateful for the donor register and everything that Shirley Nolan did it is the reason that Daniel is still alive.

Daniels parents realised something was wrong when he began suffering nosebleeds and they found blood in his nappy when he was three weeks old.

He then developed sepsis and spent 11 days fighting for his life in intensive care.

Georgie and dad Andrew, 38, even asked the hospital chaplain to christen Daniel is his cot as they feared he might not survive.

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Georgie, from Huntingdon in Cambridge, said: The doctors told us he needed a bone marrow transplant to save his life, but that some children didnt make it to transplant.

It was devastating. We didnt know if he would start to walk or go to school. I remember thinking, I need him to be christened in case something happens.

It was emotional. Daniels big sister Holly wore a christening gown made from my wedding dress and Id planned for Daniel to wear it too, but that obviously wasnt possible.

Daniel was eventually diagnosed with Wiskott-Aldrich syndrome, a rare genetic disorder that affects one in every one million boys, in May last year after an unrelated hernia operation.

Neither his parents nor Holly, four, were a suitable match, so their only hope was to find a donor through the stem cell register, which the charity Anthony Nolan managed within two months.

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Daniel was due to undergo the transplant in March last year, but his procedure was postponed after the Covid pandemic began for fear there would be a shortage of doctors, nurses, or beds.

Georgie said: That was really scary. Daniel had been through all his preparation and we were ready to go, then everything blew up before our eyes. We didnt know what would happen.

Daniel continued to deteriorate, picking up more infections until his transplant finally went ahead at Great Ormond Street Hospital at the end of June as doctors could not risk waiting any longer.

He was only allowed one parent with him as he underwent chemotherapy to remove his immune system ahead of the transplant.

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Daniel returned home in August but suffered a drug relating seizure, then graft versus host disease as his body tried to reject the donor cells and spent last Christmas in hospital.

Georgie said: The last two relapses have been particularly difficult. During the last one he began vomiting digested blood. His stomach had to be drained constantly.

At that point they said there were no more options, we had to do another transplant and we needed a different donor as his body had rejected the first.

It will be hard spending another Christmas in hospital, but we feel so lucky to have found another donor to give Daniel a second chance. That wouldnt have happened without Anthony Nolan.

Time is running out for Alife Pinckney to find a lifesaving stem cell donor.

The eight year-old from Exeter relies on weekly blood transfusions to top up his critically low levels of platelets. That has bought Alfie more time, but his condition is getting worse.

His desperate family know his only hope is a transplant, but his mixed British and Chinese heritage makes it harder to find a matching tissue type to prevent his body rejecting the donor cells.

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Alfies mum Lily, said: Its so hard to watch your child in pain and be incapable of helping. Its tearing me apart. Our only hope is to encourage as many people as possible to join the register.

Alfie developed Aplastic Anaemia when he was five years-old. It means his body cannot produce the platelets he needs for his blood to clot properly and he cannot fight infection.

At the time his British-born parents Lily and Charles were living and working in Hong Kong. They returned to the UK just before lockdown last year to be near family and step up Alfies treatment just like Shirley Nolan moved home from Australia to search for a donor for Anthony.

They hoped they had found a donor earlier this year when a woman in Brazil was confirmed as a matching tissue type, but that fell through.

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Since then, Alfie has continued to deteriorate as his body burns through the weekly platelet transfusions and he suffered a terrifying haemorrhage.

Dad Charles said: He had a huge, uncontrollable nosebleed and bleeding from the gums. He was clutching the kitchen bin, vomiting blood, screaming Daddy, help me.

We rushed him into the high dependency unit and I was mopping blood of his arms, face, and torso as several doctors and nurses tried to keep him alive. It was harrowing.

Its so easy to join the register. It only takes three minutes to swab your checks, then you can get on with your life. But that could help to save Mason or another childs life.

Katie Jordan got the devastating news that little Mason had blood cancer on Christmas Eve last year.

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The only cure for his Juvenile Myelomonocytic Leukaemia was a bone marrow transplant but mum Katie was not a good match, nor was anyone on the donor register.

Most children with the disease only survive for 12 months after diagnosis. So Katie, a single mum like Shirley, launched her own campaign to save her son.

Masons Mission raised nearly 54,000 for Anthony Nolan, helping the charity to test the backlog of 25,000 swab samples that built up during the pandemic and add them to the donor register.

Katie, from Stockton-on-Tees said: I was living my worst nightmare. It was heartbreaking to think that Christmas could have been our last together.

I would give my life for Mason, but I wasnt a match. So I did everything I could to find a donor.

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Thankfully Anthony Nolan did find a suitable donor two months later and Mason had a successful stem cell transplant in March this year.

He was rushed back to hospital over the summer after developing blisters all over his body and spent a week fighting for his life in intensive care before they subsided.

But the two year-old made a full recovery and is now looking forward to a happy, healthy Christmas.

Katie said: We were lucky that we found a donor so quickly. When they told us, I couldnt stop crying. I would love to meet his donor one day and thank them."

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The Anthony Nolan legacy: Three boys given hope of beating deadly blood diseases - The Mirror