The key of life: We meet Mark and his brother Declan
Declan McMullan was struck down with Locked-in Syndrome after suffering a heart attack. Now an emotional video of his brother Mark singing to him has gone viral. Ivan Little meets the Co Down family behind the YouTube sensation.
The powerful YouTube video of Saintfield student Mark McMullan singing Bring Him Home from the musical Les Miserables to his disabled brother Declan has gone viral on the internet with hundreds of thousands of people across the world watching it.
And now Mark - who won a host of new admirers, including Hollywood superstar Russell Crowe, after he sang the song on television - is on the threshold of a new career as a professional singer. Ivan Little has met the brothers and, in the first of two articles, he tells the story of Declan McMullan, whose parents were told he had no chance of surviving after he suffered a cardiac arrest in his home three years ago. He can't speak, but severely disabled Declan McMullan can still talk ... with his eyes.
And watching this quite remarkable young man, who came back from the dead after a cardiac arrest, communicating with his loving family by blinking in response to their patient promptings is a sight to behold.
Sometimes, on the bad days, the messages from the 22-year-old Saintfield man, who suffers from Locked-in Syndrome, aren't what his relatives want to hear as he spells out that he doesn't want to live anymore and as he compares his condition to being buried alive.
But, on the good days, like the one on which I met him, Declan who "died" for 30 minutes three years ago after his heart stopped, is an inspiration with an impish sense of humour.
And he is clearly revelling in his brush with fame after a video of his brother Mark singing Bring Him Home from the musical Les Miserables to him in a pub became an internet sensation and was followed by TV appearances north and south of the border, where another guest, Oscar-winner Russell Crowe, was visibly moved.
Even before all the hullabaloo, the two brothers had a close and unbreakable bond. Mark is by Declan's side as often as his studies and musical commitments allow. They're not exactly Ant and Dec, but you get the picture.
Yet, three years ago, Declan was at death's door - indeed, it had almost slammed shut on him.
But before tragedy struck, on March 16, 2012, Declan had been a normal, fun-loving full-of-life teenager.
He'd been out for the night with friends and the McMullans have a photo of him enjoying himself just hours before his life was turned upside down with no warning.
His father John says: "Declan went to bed that night and died in his sleep."
Declan's mother Brenda found him. She doesn't know why, but she had a feeling that something was wrong. And it appears that her inexplicable sixth sense, or mother's intuition, actually saved her son's life in the long run.
She says: "I'd heard Declan getting up for a glass of water and, for some reason, I just popped my head in to see him. I knew what I saw wasn't right. I called his name but got no reply.
"He was lying with his arms stretched out and, when I touched his hand, it was stone cold. I looked at his chest and it wasn't moving. Then I saw that his eyes and his mouth were wide open.
"I wanted to scream, but nothing would come out, so I just rushed to get my husband."
An ambulance was on the scene within eight minutes, during which time John McMullan had used his CPR training in a frantic attempt to help his son.
"I just couldn't give up. I thought Declan was dead, but I didn't want to say it," John says. "I thought the CPR was irrelevant, but I just kept on breathing for him because I knew it was important to keep the oxygen going to his brain to preserve his organs in the hope the ambulance crews could bring him around."
The paramedics worked on Declan for half-an-hour and a local priest gave him the Last Rites, but eventually he rallied. But that wasn't the end of the nightmare.
The paramedics "lost" Declan twice in the ambulance on the way to hospital. They later told the McMullans they didn't know how he was still alive.
"They were going to give up after five resuscitations, but they then felt a slight pulse and they continued to give him eight more defibrillator shocks," says Brenda.
Declan was in intensive care in the Royal Victoria Hospital in Belfast for six weeks and it was established that his cardiac arrest had been caused by an underlying condition which he didn't know he had, called Wolff Parkinson White Syndrome, which has no symptoms and doesn't show up on normal scans.
At one point in the Royal, doctors urged the McMullans to let them switch off his life-support machine.
"They wanted us to let him pass away peacefully," says Brenda, but for her and John it was an agonising dilemma made even more difficult because they'd faced the same heartbreak the year before Declan was born.
Brenda says: "Our baby daughter arrived 15 weeks early with a clot on her lungs and brain and they turned off her life-support, but we always regretted it, thinking that if we hadn't gone along with that, she might still be here."
However, when hope for Declan was fading, one medic privately confided in John that, if he was his child, he would give him another couple of days. Which the McMullans did and - miraculously - the teenager opened his eyes.
Declan's cardiac arrest was similar to the one suffered on live television by Bolton Wanderers' footballer Fabrice Muamba during a match against Tottenham Hotspur. What makes it all the more uncanny is the fact that, by a bizarre twist of fate, Fabrice almost died the day after Declan fell ill.
But, while the footballer recovered, Declan wasn't so fortunate. He was left with severe physical disability and brain damage which means that he suffers from Locked-in Syndrome.
His hearing hasn't been impaired and he has full understanding of what is being said to him, but he can't speak, move, or see and he uses a wheelchair. He's fed through a peg in his stomach and he's catheterised, but while he is tetraplegic, Declan still has feeling across his body, from head to toe.
But Declan's inability to express his innermost feelings was a huge problem until the intervention of a medic who told the McMullans he had worked out a system of helping him to communicate - with his eyes.
He said that he found that, if he called out the letters of the alphabet, Declan would respond by blinking at the appropriate ones to form a word.
The discovery was a major boost for the family and for Declan, who was frustrated that he was trapped in his own body, but couldn't relay his thoughts to anyone until he learnt how to speak with his eyes.
"We knew he was in there," says his dad, who's a painter and decorator. "It was just a case of trying to get him out."
And it doesn't take long for an outsider to pick up the signals and start a conversation with Declan, whose smiles and laughter are infectious.
But Brenda says it's not all sweetness and light.
"There are dark and difficult days. Declan knows the medical reasons why he took sick, but he also wants to know from God's point-of-view what he did wrong, because he was a good boy," she says.
"Sometimes, he tells us he just wants to die - that he wants it to be all over and that he can't take anymore, because he says being locked in is just like being buried alive."
But, happily for the McMullans, those days are the exception rather than the rule. "He has amazing strength and we get all our strength from him," Brenda says.
It almost goes without saying that the entire family, including two other children as well as Mark, love Declan with a passion and wouldn't be without him.
"Even now, looking back on that awful morning when this all started three years ago, it seems like a dream. And I wonder if it really did happen. But I know it did," Brenda says.
"However, Declan is my son, he talks with his eyes and I can hear his voice through those eyes. He is just astonishing and he'll do anything for a laugh."
Getting Declan back to Saintfield after his staggering 65 weeks in the Royal and then Musgrave Park Hospital was a major breakthrough in his recovery and added a special poignancy to the lyrics of the song Bring Him Home.
But his return to the house on the Crossgar Road presented its own challenges for the McMullans, who had to set in place a network of carers to help them to tend to his every need, 24/7.
The McMullans say Declan now receives a good care package, but they had to fight for it and for the financial help to extend and adapt their home to make it easier for them and Declan to cope.
The family takes turns to sleep in a bed beside Declan's to ensure that he gets through the night safely. The slightest sound can set their alarm bells ringing about Declan, who goes to a number of outside centres for activities, which include drama and music classes, and for physiotherapy.
But his dream is to swim again.
"Declan was a great swimmer before his illness. And he would love to go back to the pool, but it would be really expensive for us to get professional assistance," says Brenda, who hopes that a fund set up for Declan might make her son's wishes come true.
The fund, which aims to aid Declan's recovery and rehabilitation, has its own Facebook page and the McMullans also hope the money raised can help them to buy him a special bike, similar to the one he uses at his weekly physio sessions in a bid to stimulate muscles in his legs.
Declan has admitted that he was as surprised as Mark to see the Bring Him Home video going ballistic on the internet, but he didn't object to his new-found celebrity, which included those TV appearances in Belfast and Dublin.
"Declan said that this was his time - he was now a pop star," says Mark. "He thought it was great."
Brenda says: "Declan wanted to become a film director before his illness. He was going to do media studies at the University of Ulster in Coleraine and now he has found himself in front of the camera as opposed to behind it.
"And, given his interest in films, it was particularly exciting for him to meet Russell Crowe on The Late Late Show and to have his photograph taken with him."
Declan is also a huge fan of X Factor star Olly Murs and he has seen him a couple of times performing in Belfast.
"When he was in hospital, we still managed to get him to one of his concerts. He even called a golden retriever Olly as well," says Brenda, who met her husband John when they were at the same school in Downpatrick and were part of a choir which went to Rome to sing for the Pope.
Declan followed in the footsteps of his family members by joining the Church choir, but he stayed for only a day before becoming an altar boy.
In his teens, Declan worked in the Eclipse cinema in Downpatrick and even though he can't see, he still returns there to catch a film or two.
With a mischievous grin, Declan swore me to secrecy over some of his film choices.
In spite of his disability, Declan is still a film buff. His bedroom has a Smart TV, which describes the on-screen action as Declan listens to the dialogue.
As for the future, John McMullan says Declan ''will live as long as any of us".
His heart defect has been repaired and his medicines keep him healthy, but for Declan's parents the understandable fear is about what would happen to him if something happened to them.
However, Brenda says: "For the moment, we are just thankful that we still have him with us."
Devastating condition with no cure
Locked-in Syndrome is a rare but incurable condition which affects nearly all voluntary muscles in the body, except the eyes, leaving the sufferer paralysed.
Although they cannot move, or speak, those with this horrific ailment are aware of what is going on around them.
In some cases, the sufferer's eyes can also be paralysed - and this is known as Total Locked-in Syndrome.
Locked-in Syndrome usually manifests itself in quadriplegia, with the sufferer unable to communicate, despite the fact their mind is unaffected by the disease.
The symptoms are similar to those of sleep paralysis, with patients deemed to be conscious and aware.
Often communication is possible through blinking, or eye, movements. Meanwhile, there may be some sensation left in the body, while others are able to move certain facial muscles.
In other cases, people with this syndrome have no co-ordination between their breathing and voice, therefore they cannot produce voluntary sounds.
Although there is no standard treatment, or cure, available for Locked-in Syndrome, stimulation of the muscles with electrodes has been helpful to help regain some muscle function.