‘Miracle’ bone marrow donor found for baby with deadly genetic disease days after first birthday

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‘Miracle’ bone marrow donor is found for baby with deadly genetic disease just days after his first birthday

  • Reign Miller-Hardy, from Barry, South Wales, would’ve died without transplant  
  • Hemophagocytic lymphohistiocytosis causes immune system to attack organs 
  • He has now been given a 75-85 per cent chance of survival with the transplant

By Nicole Conner For Mailonline

Published: | Updated:

A ‘miracle’ bone marrow match has been found for a baby with a deadly disease just days after his first birthday.

Reign Miller-Hardy, from Barry, South Wales, suffers from a genetic condition which meant he would have died without an urgent bone marrow transplant.

A ‘one in a million’ donor has been found and he will undergo the procedure next month after a week of intense chemotherapy.

Reign Miller-Hardy, (pictured) from Barry, South Wales, suffers from a genetic condition which meant he would have died without an urgent bone marrow transplant

When the infant first became ill, his family feared he had Covid-19, but it turned out to be something even worse

He has spent the last six weeks in hospital in receiving specialist care

When the infant first became ill, his family feared he had Covid-19, but it turned out to be something even worse. He has spent the last six weeks in hospital in receiving specialist care

Reign’s condition, hemophagocytic lymphohistiocytosis (HLH), causes the immune system to attack healthy tissues and organs including the liver, brain and bone marrow reports the Mirror. 

The donor was found after a huge public campaign by his family who urged more people to sign up to the stem cell register and donate blood. 

His great auntie Lisa Evans, 32, speaking on behalf of the family, said he has now been given a 75-85 per cent chance of survival.

Reign's condition, hemophagocytic lymphohistiocytosis (HLH), causes the immune system to attack healthy tissues and organs including the liver, brain and bone marrow

Reign’s condition, hemophagocytic lymphohistiocytosis (HLH), causes the immune system to attack healthy tissues and organs including the liver, brain and bone marrow

His great auntie Lisa Evans, 32, (pictured together) speaking on behalf of the family, said he has now been given a 75-85 per cent chance of survival

His great auntie Lisa Evans, 32, (pictured together) speaking on behalf of the family, said he has now been given a 75-85 per cent chance of survival

She said the family had confirmation Reign ‘had a 9/10 match’ only two days after his birthday.

When the infant first became ill, his family feared he had Covid-19, but it turned out to be something even worse. 

Haemophagocytic lymphohistiocytosis 

  • Haemophagocytic lymphohistiocytosis (HLH) is a rare immune disorder where the body reacts inappropriately to a ‘trigger’, usually an infection.
  • White blood cells become over-activated, causing damage to tissues such as the liver, spleen and bone marrow.
  • There are two main types of HLH: primary (‘familial’) and secondary. 
  • Primary HLH is caused by a genetic mutation that can be passed on from parent to child. 
  • In primary HLH, mutations usually affect the ability of white blood cells to clear infections. 
  • Secondary HLH is not inherited but develops as a result of another illness, usually a widespread infection or immune disorder. 
  • Symptoms may be confused with common childhood illnesses but are more severe. 
  • They include a skin rash, raised temperature and swollen liver, spleen and lymph glands. 
  • As HLH is uncommon and serious, treatment is usually coordinated by a specialist centre experienced in treating rare immune disorders. 

He has spent the last six weeks in hospital in receiving specialist care. 

His parents Scott Hardy, 28, and Ashleigh Miller, 32, have had to take it in turns to be by their son’s bedside at North Children’s Hospital in Newcastle.    

Ms Evans said: ‘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.

She said how he ‘didn’t improve’ so he was tested for coronavirus, but it ‘came back negative’.  

‘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 the University Hospital of Wales (UHW) in Cardiff, Lisa said Reign’s condition deteriorated very quickly.

He was taken for a lumbar puncture and scans where his diagnosis was confirmed.

Reign was then started a round of chemotherapy and was put in an induced coma to let his body rest before being transferred to Newcastle. 

Hospital staff spent weeks searching the global database for a match with Reign but someone was only discovered thanks to a recent sign up. 

His family have now thanked everyone who signed up on the register, gave blood and supported their journey.

Ms Evans added: ‘I would also like to express the importance of people who are eligible to donate blood or stem cell to still do so.

‘We as a family are so lucky that Reign has found his miracle match, but there are still so many people who are still waiting for that all-important donor.’ 

Speaking about Reign’s current health, Lisa added: ‘He’s stable but it only takes something as small as a common cold for him to go back to how he was.’