Brave Liverpool fan born with life-limiting disease celebrates Valentine’s Day

A little boy who was born with a life-limiting disease that left him with half-a-heart and blue skin has a special Valentine’s Day planned with his family.

Mum Charmaine Oates, 31, and dad James Weiss, also 31, have made sure to spend Valentine’s Day “at home as a family” the moment their “little soldier” was diagnosed with Hypoplastic Left Heart Syndrome.

Romeo was just two days old when he underwent his first operation for the disease, which means he was born with half a heart.

Charmaine was five-months pregnant when she found out little Romeo had the disease and said his skin used to be "so blue" they nicknamed him "our little smurf."

She told LiverpoolEcho Valentine's Day is always a special day for the family who choose to spend it "eating a nice meal and watching films."

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Charmaine said: "Romeo’s heart doesn’t work like ours. He was born with a life-limiting condition – Hypoplastic Left Heart Syndrome (HLHS), which means he was born with half a heart.

"It is not an easy condition to live with. And it is a hidden disease because it doesn’t show.

"Valentine’s Day is always a special day for us, and we spend it together at home as a family – eating a nice meal and watching films."

Due to the nature of his condition little Romeo – a big Liverpool FC fan – has been in danger of losing his life on many occasions.

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Charmaine said the first time he went into cardiac arrest was when he was seven-months-old and was sat watching TV with his big brother.

She said: "When Romeo was seven months old, he was sat watching television at home with Wyley.

"I had been in and he was fine. But within five minutes, he had just gone – he had gone into cardiac arrest. There was no reason for it, it just happened.

“He is alive thanks to hospital medics always managing to save him. We’ve thought we were going to lose him so many times.

“You can look perfectly normal but be so broken. He’s such a fighter, though. He always manages to pull through somehow."

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The whole of February is important to the family who also celebrate the British Heart Foundation marks it as National Heart Month.

The family receive help looking after Romeo through Claire House – a children's hospital who help seriously ill and terminally ill children and families.

Charmaine said Claire House gives them a "boost" and reminds the parents that they "can do this" as "every single person at Claire House gets what" they are going through.

She said the charity has been a "miracle" for the family and will choose Claire House for end of life care if "anything were to happen to Romeo."

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Charmaine said: "It has been a miracle for us because, some days, he just can’t play or doesn’t want to play.

"And we will come to Claire House and we will have family stays, where we all stay at the hospice as a family. We will go for walks from the hospice to Claremont Farm and we will spend time with his brother.

"Mainly, we like to spend time in the family lounge and watch films together. It is nice and restful, because for once I have someone who will cook for me.

"It is great just to be able to breathe and be away from normal life. Everyday life is just hectic. Claire House has made life more enjoyable for Romeo.

"I don’t think we would have got through the last six years, if it hadn’t been for Claire House.

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