An Irish baby was diagnosed with a rare disorder after her parents thought she had a cold.
Luna Aherne-Burns, from Cork, has been in hospital since July 9 after doctors found she was born with a severe combined immunodeficiency.
Now the four-month-old is in Newcastle in the UK with her mum Fiona for six months, as she has to undergo a bone marrow transplant.
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Fiona shared that after speaking to a public health nurse, she was referred to her GP.
She told RSVP Live: "It started off as a cold and it turned out to be way worse. She ended up in hospital and has been in hospital since July 9.
"It’s quite rare. For her treatment, she had to come over to Newcastle in the United Kingdom because they don’t treat it over in Ireland.
“It’s very scary. We’re learning as we go because we had never heard of it before. We spoke to our public health nurse and they were concerned about the cold and how it was affecting her.
“She wasn’t putting on weight, so we went to the GP who sent us to the hospital.
“We had gone in on a Thursday and got the diagnosis on the Saturday. It wasn’t actually too long.
“On the Sunday we were transferred to Crumlin Hospital in Dublin where the immunology specialist was. They organised our transport over here to Newcastle.”
About one in 50,000 babies are born with the condition with them appearing to be healthy at birth, however, they are highly susceptible to severe infections.
The Cork mum explained that Luna has to undergo chemotherapy before getting a bone marrow transplant.
“SCID stands for severe combined immunodeficiency. It means that when she was born, her immune system isn’t as it should be.
“You have your white blood cells and within them you have T-cells that fight off infections. Her body doesn’t have any and she can’t produce them.
“She has to undergo chemotherapy and then Luna will have to have a bone marrow transplant. She’s in isolation now and can’t leave the hospital since she arrived.
“The bone marrow transplant should be a curative treatment but we’ll have six months back home where we’ll have to keep her a bit isolated and away from crowds.”
Fiona and her daughter are currently in Newcastle while Luna’s dad and two siblings remain in Cork.
The Cork mum explained that it’s been very difficult to be away from her family.
“It’ll be about six months, we were only told three but now it’s going to be six.
“We’re in hospital now for the first two or three months constantly. They said that after a few months we’ll be in a halfway house over here. She’ll be able to be brought back through that every week for the few months afterwards.
“It’s very hard, especially because my six-year-old fully understands what’s going on and she misses us so much and I miss them so much as well.”
Her friend Laura opened a GoFundMe to help the family to cover the costs of travel, accommodation, food and nappies while Luna is getting treatment.
Fiona explained how overwhelming all the support from people has been, saying: “It’s been absolutely amazing.
“The support that we’ve gotten has been truly, truly amazing. We’re overwhelmed by how much people have been helping and we’re so, so grateful for it.
“We were a little bit nervous at the start but at home people have wanted to help and that’s just the way that they can.
“We were very nervous at the start to see what people’s reactions would be, but we’ve got all good reactions from people wanting to help.”
To donate to Luna’s GoFundMe, you can click here
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