Wednesday 24 January 2018

Eight-year-old Sean. . . the bravest boy in Ireland

Deirdre Reynolds talks to a mother about her son's long and arduous battle to be able to run like his brother and sisters'When he was three and a half, Sean took his first steps. That was like winning the lottery

Eight years ago, doctors were getting ready to remove Sean Byrne's right leg before he was old enough to remember a thing.

Today, the Kildare schoolboy will want to remember every moment as he's crowned Child Hero of the Year at the SMA Know How maternity and infant awards 2012.

Born with severe limb abnormalities, nine different doctors advised Sean's parents to have their eldest boy's leg amputated as a baby.

Now, thanks to groundbreaking surgery, sports-mad Sean is on track to outrun little brother Cian by the time he's 16.

"Sean's goal in life is to beat his brother Cian in a race," jokes mum Catherine, from the family's home in Kill. "It's what gets him through the pain of surgery and physio.

"Before Sean was born, we weren't aware there were any problems," she recalls. "So when we saw that his right leg was only level with his left knee (because his femur didn't grow), it was quite a shock.

"His left arm also ended at the elbow and his right elbow was missing.

"The doctor told us the best thing to do was to amputate his leg or rotate it – cut it off and turn everything backwards.

"It was barbaric," adds mum-of-four Catherine. "As the doctor told me, Sean was sitting on my lap sucking his toes because he couldn't suck his thumb.

"There was nothing wrong with his leg from the knee down, so why on earth would you take away a good limb?"

Determined to save their son's leg, Catherine and husband David sought second opinions from doctors across the globe.

"In total, nine doctors said amputation was the best thing for Sean," says Catherine, an assistant credit manager. "But I don't think I ever lost hope.

"Then I stumbled upon a magazine article about a little boy in England who had successfully had his leg lengthened.

"Finally, we found a doctor in the States called Dr Paley who told us he could help Sean walk on two equal length legs by the time he's 16."

"He warned us that it would be a long, painful and expensive process. But I couldn't see how amputating his leg would give him a better quality of life."

Known as an 'Ilizarov apparatus', the limb-lengthening procedure promises to stretch Sean's leg by 45 centimetres over the course of five surgeries.

Since his first surgery as a tot, he's already braved a 17cm extension.

"After the first operation, he was like the bionic man with this huge metal apparatus on his leg," says Catherine, who nominated Sean for the award he collects today.

"Metal pins go into his bones that you use a key to turn four times a day for four months. It's extremely painful, but even at two, Sean was turning the key himself.

"The worst part was the physio – he used to vomit every day and beg, 'Please don't let them do the big bends'.

"As a mum, it's heartbreaking – but you just have to wipe his mouth, give him a drink of water and start again."

And Sean's hard work in hospital paid off when he took his first steps a year after the family flew to the States to start the treatment.

"When he was three-and-a-half, Sean took his first steps," remembers his mum.

"To me, that was like winning the lottery. It meant that he could go out in the garden and play with his brother and sisters."

Twins Aoife and Cian (6) and Mia (5) are sure to be cheering the loudest when their big brother picks up his trophy at the Shelbourne Hotel.

But there's another unlikely hero in the Byrne household.

"Between the surgeries and physio, the whole thing costs almost €1.5m," explains Catherine. "The HSE said they would give us nothing because it was outside the EU. Luckily, our health insurance with Quinn Healthcare covered it.

"I know what people say about Sean Quinn and that he's in jail – but I would shake the man's hand."

As young Sean gears up to face his third round of surgery next May, Catherine reveals she still doesn't have an answer to the inevitable question, 'Why?'.

"At the moment, Sean asks questions like, 'Will my hand grow?'" she says. "But at some stage, I'm sure he's going to ask 'Why?'."

"After Sean was born, we went for genetic testing because we wouldn't have had any more children if it was genetic.

"However, the doctor said if he hadn't seen Sean, genetically he's perfect.

"Then you're racking your brain, wondering: 'Was it something I did during the first eight weeks of pregnancy?' But there was nothing I could think of. It would be nice to have an answer."

For now, though, young hero Sean's attitude to life is not 'why?' but 'why not?'.

"Apart from his disability, Sean is just like any other eight-year-old boy," says Catherine.

Irish Independent

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