Exeter family's desperate plea as boy, 8, will die without bone marrow transplant

A sick child in Exeter who has to visit the hospital every week 'will die' unless a suitable bone marrow donor can be found urgently.

Alfie Pinckney has aplastic anaemia, a deadly disease affecting bone marrow. It means he must receive weekly transfusions and requires constant monitoring by his father.

The condition means the eight-year-old's teeth fall out and he suffers from "terrifying" nose bleeds, as his body cannot control bleeding.

Now his family say a bone marrow donor must be found urgently in order to save Alfie's life.

"We are at the critical end of the triangle now, where it's getting worse and worse and more and more scary", said Alfie's dad Charles.

"If I don't take him to hospital once a week, he will die," he added.

'I'm a dad - I want to save his life'

Charles and his wife Lily say the only solution is to find a blood marrow donor with the right genetics to be a match, which unfortunately neither of his parents are.

They are now urging people to take a simple swab test at home, which can reveal whether someone may be able to save Alfie's life.

"All you have to do is get a swab kit, which is like a Covid lateral flow test, and you just swab the inside of your cheek and send it off, and then you'll become someone on the register, to see if you're a match," Charles said.

"I've reached out to all of my friends, colleagues, contacts... but we cannot find a donor for [Alfie] at the moment.

"You know, I'm a dad - I want to save his life.

"So, that's my appeal: Go out, get tested, go home - you can get tested at home. That's what all my friends are doing," he said.

'Daddy, help me'

Alfie was first diagnosed with the condition in 2018 when he was just five years old.

The illness means he cannot produce enough red blood cells, white blood cells or platelets. It is incredibly rare, affecting just one in every two million people.

Charles said it had already become clear Alfie was getting worse before he had a "massive haemorrhage" in March 2020.

Alfie was taken to the Children's High Dependency Unit at the Royal Devon and Exeter Hospital (RD&E), where Charles said the head doctor "wouldn't leave his side".

Charles added: "[The doctor] said, 'cancel everything I've got'. He admitted to us just two weeks ago... he said, 'I didn't want him to die on my watch.'

"So, I was mopping blood off of his face and keeping him awake and my wife was just in shock in the corner. And there were two key doctors, a registrar, and seven nurses just trying to save his life."

Alfie's illness has impacted on the entire family. They took the decision in November 2020 to relocate Alfie and his two twin sisters to Exeter, which means they are close to the RD&E hospital.

Charles has also given up work to become a full-time carer.

The 44-year-old said he used to run a successful investment property firm, but now spends his time looking after Alfie.

Charles said: "I have to go up to the hospital, I have to rush into school if he's had a nose bleed [or] if his teeth fall out because his body can't control bleeding... I have to be up there with swabs.

"It's terrifying. We've learned to live with this, but when you look at it, you wouldn't wish this on anyone, obviously."

He says Alfie's five-year-old twin sisters are "equally affected".

"They climb into bed with me and clutch onto me, and one of them burst out and said 'You love Alfie more than us', because we have to spend so much time with him," he said.

"We try to balance it out, but I can't not be in the hospital for five hours while [Alfie] is having his transfusions... but then they see some sort of favouritism.

"It's the knock-on effects, it's not just his illness."

'If he could survive and be healthy, I'd give up my life'

Charles and Lily are now campaigning for more people to be registered as donors, in the hope it might save Alfie's life - or at least the life of someone else with the condition.

Charles said it would be "the most amazing thing in the world" if someone is able to donate their bone marrow for Alfie.

"I'd give up the shirt on my back if someone could do it," he said.

"I would give up everything, I would sleep on the street. If he could survive and be healthy and live a normal life... then I'd give up my life."

Charles and his wife are unable to donate their bone marrow because it is not compatible. While Charles has a western background, Lily is Hong Kong-Chinese.

Now the couple's only hope is for more people to register.

More information about donating bone marrow can be found on the NHS' website here.