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Wales Online
Wales Online
Health
Mark Smith

'Our precious baby son will die without an urgent bone marrow transplant'

Time is running out to find a bone marrow donor for a 12-month-old boy who has a "one in a million" deadly disease.

Reign Miller-Hardy, who turns one this week, was found to have the life-threatening genetic condition hemophagocytic lymphohistiocytosis (HLH) in August this year.

It causes the immune system to attack healthy tissues and organs including the liver, brain and bone marrow.

After being admitted to the University Hospital of Wales (UHW) in Cardiff, Reign has spent the past six weeks in hospital in Newcastle where he is receiving specialist care.

However, his family say he will not survive without a bone marrow transplant which is needed urgently. Despite searching the global database, no match has been found for him.

His heartbroken parents Scott Hardy, 28, and Ashleigh Miller, 32, from Barry, who have been in Newcastle since August, said in a short statement: "All we want for our baby son's first birthday is a bone marrow donor."

Reign Miller-Hardy is in desperate need of a bone marrow transplant (Lisa Evans)

Reign's great auntie Lisa Evans, 32, speaking on behalf of the family, said: "It's a really hard illness to diagnose as it's so very rare. He had a one in a million chance of getting this disease.

"Reign had a temperature and was just really miserable for a few days, so the doctors thought it was either a virus or an ear infection.

"He didn't improve so they tested him for Covid, but that came back negative. This all happened in the space of four to five days."

After being admitted to UHW, Lisa said Reign's condition deteriorated very quickly and he was taken for a lumbar puncture and scans where his diagnosis was confirmed.

Reign was put in an induced coma (Lisa Evans)

He then started a round of chemotherapy and was put in an induced coma to let his body rest. The decision was then made to transfer him to Great North Children's Hospital in Newcastle.

"Looking back he did have a few coughs and colds, which is a sign new that his immune system was not working properly," said Lisa.

"But you would never have thought he'd be in this situation."

Reign with his dad Scott Hardy (Lisa Evans)
Reign with his mum Ashleigh Miller (Lisa Evans)

Speaking about Reign's health, Lisa added: "They have suppressed the HLH so he's stable, but it only takes something as small as a common cold for him to go back to how he was.

"He's in isolation at the moment, but he is being allowed out of the ward for half an hour a day. Because of all his platelet and blood transfusions it has boosted his immune system.

"He's clinically well enough for a transplant right now, but there isn't one available."

Reign's parents Scott and Ashleigh have had to take it in turns to be by their son's bedside as only one of them is allowed on the ward at one time due to Covid.

This may even be the case for Reign's first birthday on Wednesday, September 30.

Reign with his great auntie Lisa Evans (Lisa Evans)

"Reign's parents are finding it a bit harder now as we're all in local lockdown so it's restricting the rest of the family [travelling to Newcastle and visiting]," said Lisa.

"I was going to do a big family fun event in Barry in his honor, but that's had to be cancelled because of the Covid situation.

"We'll have to make do with video calls to them for a while."

People aged 17-30 can join through giving blood with the Welsh Blood Service, or request a swab kit from Anthony Nolan or DKMS. Those aged over 30 and up to 55 can register here.

For more details please go to www.welsh-blood.org.uk or www.anthonynolan.org

Lisa concluded: "We are on borrowed time. He won't survive without the bone marrow transplant."

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