Playing with her two-year-old son at home, Michelle Aslin knows she has to make the most of every precious second.
Her smiling little boy Reggie was born with only half a heart, meaning he could go into cardiac arrest at any moment.
The brave youngster, who has repeatedly defied the odds since birth, has just a one in five chance of reaching five years old.
And with his insides ‘too damaged’ for a heart transplant, his doting parents have been told he likely won’t live beyond his teens.
For Michelle, it is an unimaginable thought that her "hero" son who has already survived two open heart surgeries will one day die.
And so the mum-of-two – who also has a 15-year-old daughter, Katelyn – has a heartbreaking wish for when that time comes.
"I’ve asked God that when Reggie’s time is up, I can go before him so I can help him on his second journey beyond life," she said.
"I pray, before you take him, take me. I say to God, ‘Please let Katelyn be old enough and stable enough so I can go with Reggie."
Courageous Michelle, 37, spoke to Mirror Online as she and her husband, Lee, enjoy every moment possible with their beloved boy.
The couple only recently found out their son is not likely to receive a heart transplant because of the damage inside his small body.
"We make the most of every day, even if it means staying in the house and playing with him," said Michelle, from Grimsby, Lincolnshire.
"He has a one in five chance of reaching the age of five years old. He could have a cardiac arrest any day, at any minute.
"We take every day as it comes and just enjoy him."
She added: "I cannot begin to imagine the truth that one day my son, my hero, my beautiful boy will be gone too young."
"Warrior" Reggie was born with hypoplastic left heart syndrome (HLHS), a birth defect where the left ventricle does not form properly.
"It means he has no left side of his heart," Michelle explained.
The youngster had been a ‘miracle’ baby for his parents, who had been told they would not be able to conceive without IVF.
"I had Katelyn from a previous relationship," his mum continued.
"Lee and I had been together for about six years and we started trying for a baby. We eventually went for some tests and were told our only option would be IVF. So we just gave up on the idea."
She added: "We thought we were blessed with Katelyn anyway."
But following 2015 New Year’s Eve celebrations in London, Michelle began to feel unwell and her breasts grew painful.
Before visiting her GP, she decided to take a pregnancy test, knowing the doctor would want to "rule this out" as a possibility.
"I did a pregnancy test just to rule that out and it came back positive. I sent Lee to Asda – I just couldn’t believe it," she recalled.
The mum took test after test – with disbelief quickly turning to joy. And at an early gender scan, she discovered she was expecting a boy.
"It was brilliant," she said.
"We knew his name was Reggie straight away."
But at Michelle’s 20-week scan, she and Lee, an ambulance driver, were shocked to be told by medics that their unborn son had HLHS.
"I could hear them saying something was wrong so I burst out crying. I honestly thought he’d died but I could feel him inside me," she said.
"We were then told that he had HLHS."
The couple were informed that their baby had just a 50 per cent chance of surviving birth. And if he did, they were told he could die within hours and would need to undergo three open heart surgeries.
"We just couldn’t believe it," Michelle said.
"We’d tried so long for a baby and had been told we couldn’t have one. It was heartbreaking. We didn’t keep anything from Katelyn because if anything had happened, we wouldn’t have lied to her."
Despite their son’s uncertain future, Michelle and Lee, also 37, were determined to give him "every possible chance" they could.
They turned down an abortion and ‘comfort care’ – which would have seen them take Reggie home or to a hospice after his birth.
With this route, the little boy would not have had any surgery.
"We would have gone straight to the hospice – he could have lasted an hour or a couple of days," Michelle explained.
"But I couldn’t do that. He was already moving."
Reggie was born via C-section at Leeds Royal Infirmary in West Yorkshire on September 1, 2016, weighing 9lbs, 12oz.
"He did cry when he came out," the full-time mum continued.
"Lee got to cut the cord which we never thought would be possible."
During the birth, a terrified Michelle haemorrhaged two litres of blood. It was around nine hours before she could finally see her newborn son.
"Lee sent some pictures to my phone via WhatsApp," she said.
"He was navy blue in some of his first photos."
Only four days after his birth, Reggie underwent his first gruelling operation to "re-plumb" his heart, which took nine hours.
"The operation was supposed to be on the 6th, but on the night of the 4th doctors said he was deteriorating," Michelle said.
"On the 5th he was taken down. We took photos and I got to give him a bed wash. He wasn’t dressed or anything."
She added that a nurse encouraged her to put a babygrow on her son – which she later realised was in case the worst happened.
"If anything had happened, he would have worn it," she said.
Fortunately, Reggie pulled through the operation.
"He did absolutely fantastic," his mum said.
He was treated in intensive care and on a high dependency ward, before eventually being allowed to go home with his family.
The Aslins’ first Christmas all together was "so special".
"We got him a ball pool and a lion rocking horse – even though he was too small for it – because he’s a lionheart," Michelle said.
"We loved having Reggie home, spending his first Christmas in his own environment. It was magical and we made the most of that holiday as we didn’t know if it was our last."
Reggie later underwent his second open heart op, which was seven hours long and had only a "slightly higher" chance of survival.
"This time was the toughest as we’d had our son home," said his mum.
"He was our family, he was ours, we had beautiful memories and life was great. Handing him back to the doctors was one of the worst pains I’ve ever had."
But again, the remarkable youngster pulled through.
"The recovery was tough having an infection in his neck line. But he bounced back and we were home after three weeks," she continued.
Now aged two years and three months, Reggie is "thriving".
"He’s a pain in the bum and a cheeky little monkey," Michelle said
"We’ve made so many memories. He loves cars, animals – which he calls amals – and motorbikes. He also likes listening to Spanish songs."
The toddler visits St Andrew’s Hospice in Grimsby every week, where he gets the chance to meet petting dogs and use a hydrotherapy pool.
"He has one more surgery to go – that will be his last," his mum said.
"He’s not likely to receive a heart transplant, which we’ve recently found out, meaning his lifespan is teenage years.
"He’s so damaged inside – not just his heart but everything that goes to his heart, such as his ventricles.
"He probably wouldn’t be able to accept a heart."
While Michelle hopes her son will be able to attend mainstream school in the future, a common cold could prove fatal to him.
"Any infections can be fatal for Reggie"," she said. "But we don’t know what technology is going to come out in the future."
At present, the little boy takes pills to help prevent heart failure. He also undergoes cardiac echoes every six months to check his heart.
And he is supported throughout by his proud big sister.
"Katelyn is like his second mum, he loves her," said Michelle.
"She’s been so strong. She often comes and has a little cry with me. If he, say, gets a cold, she really gets petrified."
While Reggie has yet to undergo his final operation, his parents are determined to raise awareness of congenital heart disease (CHD).
The condition is a common type of birth defect, affecting up to eight in every 1,000 babies born in the UK, according to the NHS.
It covers HLHS, which Reggie has. "I didn’t know the depths of CHD until my heart warrior was born," said Michelle.
The mum has launched a petition calling for all newborns to undergo heart scans so that any CHD cases don’t go unnoticed.
"There are so many babies dying because of undetected CHD," she writes in a post about the petition on Change.org.
"Luckily my son was diagnosed with HLHS in pregnancy but so many babies lose their life because they were undiagnosed.
"They have a bigger chance of surviving if found early. Please sign and let’s get these heart scans done on all newborns."
CHD also includes other heart defects, such as aortic valve stenosis, coarctation of the aorta and Ebstein’s anomaly.
Over the past couple of years, Reggie and his parents have befriended many other families battling CHD just like them.
"We threw Reggie a huge 1st birthday party and 10 of his guests were all babies with CHD," Michelle said.
"Friends we’ve made along our journeys. Babies who may not reach adulthood. Just like Reggie."
She added that although the recent heart transplant news was "such a devastating blow", for her son’s sake, "we cannot dwell on it".
"We need to give him the most precious, fun, exciting life he could possibly have all in a few short years," she said.
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