Parents heartbreak after losing both sons to rare disease a month apart
Two heartbroken parents have spoken of their agony after both their sons died less than a month apart from the same rare disease.
Charlie and Sharon Corcoran lost brave boys Charlie Jnr, three, and Noah, who was just six hours old, to polymicrogyria – a genetic condition which causes abnormal development of the brain – just 24 days apart in June last year.
Noah was diagnosed with the condition in the womb and died six hours after mum Sharon, 23, gave birth to him, with his brother Charlie Jr dying less than four weeks later.
The devastated couple, who live in Neasden, Wembley, have now spoken out for the first time to share the final images taken of them with their children in a bid to raise awareness of the illness.
HGV driver Charlie, 29, who is originally from County Tyrone, Northern Ireland said: "Noah broke our heart into bits, and Charlie took away whatever was left.
"Ever since, we have been existing rather than living, we're empty and feel like different people, we're just trying to get through each day.
"I feel like I'm staggering through life.
"The hardest thing is not having our boys and having to try to live without them."
Sharon said: "We'll never be the same again.
"Whenever I think 'I don't' want to be here' I think ‘I need to fight for them’.
"It's very lonely, there are reminders of the boys everywhere.
"Having kids again is a difficult prospect to think of.
"If I could say one thing to them it would be that I love them, I'm proud of them and thank them for being our boys."
Charlie Jr was born in June 2015 and was diagnosed at just three weeks old with polymicrogyria – a rare genetic condition where the brain develops with too many folds, stopping neurone responses.
In December 2017 the couple found out that Sharon was pregnant again but were quickly dealt a cruel blow after doctors told them their new baby had hypoplastic left heart syndrome.
They were also told that baby Noah also had polymicrogyria, meaning Sharon was forced to undergo an emergency cesarean section at 32 weeks, on June 11.
Doctors told the couple that Noah would most likely not survive the birth but despite battling for life, Noah died six hours after he was born.
Devastated, the couple returned home to be with their brave boy Charlie Jr where they spent a precious few weeks with him.
But tragically, two days after his third birthday, Charlie Jr’s health began to deteriorate and he was rushed to hospital before passing away on July 4 – just 23 days after Noah's death.
The couple have since been tested to ascertain who is a carrier of the genetic condition or whether both of them are, but they did not get any conclusive results but know there is a one in four chance one of them could have the polymicrogyria gene.
They are currently unsure whether they will ever be able to have any more children without passing on the disease.
Charlie said: “Sharon had to give birth knowing that Noah wouldn't make it.
"As soon as he was born doctors thought he would pass away straight away but he lasted six hours.
"Our family brought Charlie Jr in and for six hours we were able to be a family together.
“It was really difficult, as the hours went on we got more and hopeful he'd survive.
“We went through every emotion under the sun.
"I've never cried so much before, it was difficult to keep it up.
"When Noah passed away I held him and he cried out in the final moments before he died.
"Right before he passed away I put him on Sharon's chest and he opened his eyes and looked at Sharon.
"There wasn't a dry eye in the room.
"I took him to another room and put him in a small Moses basket.
“Every time I tried to walk away I couldn't – it was just too heartbreaking."
Charlie Jr had frequent seizures and required full time care and medication throughout his short life.
He bounced back from seven successive stays in intensive care.
Charlie said: "We were always told Charlie Jr wouldn't be able to live a normal life, or walk or talk.
"But he brought so much to our life, he had so much character about him and had a spark that could light up a room.
"Two days after his birthday we went back into the hospital because his breathing had become a struggle.
"We knew deep down it was going to be his final time. We spent two days in hospital holding him and playing music to him.
"On July 4 we knew how bad he was getting and we rang all our family and friends and told them we weren't sure if he had much longer left.
"I was holding him in those final moments. I was telling him it was OK to go, we didn't want him to suffer anymore and that he could go and be with Noah.
"Right before he passed away he made two sounds like he was trying to say something, and then he took his final breath.
"We knew he was gone, we were in bits.
"The final photos of us in the hospital room show us together as a real and proper family.
"It was a fleeting moment but it's always something we can look back on."
The couple are raising money on GoFundMe for Northwick Park Hospital in Wembley where Charlie Jr was cared for.
Sharon added: “We have to keep going on and try and get through the day.
"It's why we're raising money on GoFundMe to see if some good can come from this.”
You can donate here.
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