Boy who shows that life threatening illness doesn’t have to crush your spirit
AS THE afternoon draws in at the royal Manchester Children’s Hospital, the smile on Dylan Samuels’s face begins to dim. A nurse has arrived, armed with his latest batch of antibiotic injections. Dylan grimaces as the nurse works her way through the syringes.
‘Not very nice,’ he admits, shaking his head. Moments earlier, this charming 14-year-old had been reflecting on happier times, on his four years spent as a dynamic central midfielder in the Manchester United academy. Dylan loved every second.
His enthusiasm is clear as he recounts the training sessions at the Man Utd ground, the Tuesday evenings he would spend honing his skills under the tutelage of Sir Alex Ferguson’s aide rene Meulensteen and the times when club captain Gary Neville would come along unannounced to coach Dylan and his pals.
‘Just the best,’ Dylan beams. ‘you can’t put it into words what it’s like to play for the club you support.’
Perched on his hospital bed next to his family — parents Steve and Gail and ten-year-old sister Natasha — Dylan sighs and glances around his surroundings. He spent six months in hospital last year and has barely been home since the New year. He was born with cystic fibrosis (CF), a genetic condition where mucus becomes thick and sticky, clogging up a sufferer’s lungs and digestive system, causing problems with breathing and absorbing nutrients. It is a life-shortening condition for which there is no cure.
About 10,000 people in the UK suffer from CF, and half will not live to see their 40th birthday. It is particularly prevalent among people of white European descent, with about one in 25 carrying the gene. But to develop the condition, both parents have to be carriers.
Dylan was diagnosed in the womb, after a scan at 21 weeks revealed a bowel abnormality that’s linked to CF. His parents received the diagnosis on their wedding day.
HIS cystic fibrosis is particularly acute as he inherited different strains from his parents. His mother passed down the Delta F508 gene, which affects more than 75 per cent of CF patients in the UK.
Dylan’s father passed on a particularly rare mutation — the W1282X gene — which affects less than one per cent of patients. His sister Natasha has been tested and does not have CF, but carries the gene.
For much of his life, Dylan has defied the limitations of his condition, remaining fit and active, despite a gruelling medication regimen of antibiotics and nebulisers (which dissolve drugs into a mist to deliver them right into the lungs) as well as daily physiotherapy to help clear his lungs of mucus.
Scouted at his local youth club, he went on to train with Manchester City, Liverpool and Bolton, but comes from a Man Utd family, so that was the team he chose.
‘He was a very good footballer,’ says Man Utd’s academy co-ordinator, Mike Glennie. ‘When we take a player on, he fills out a medical form. Of course, the condition stood out. I took advice from the club’s medical team. Some clubs might have said no. But we didn’t take him out of sympathy.
‘He had quality, presence, he moved well with intelligence, he was competitive and skilful, he had pace and, above all, he enjoyed playing football. He played with a smile. He’s a lovely boy, a smashing lad.’
Dylan is ‘very much an exception’, adds Dr Jay Panickar, a consultant in paediatric respiratory medicine and Dylan’s specialist of nearly eight years. ‘It is extremely rare to not only compete, but truly shine at that level of sport with the condition.’
Dylan’s story is inspirational, but it has taken a sad twist: 18 months have passed since Dylan last kicked a football. His dad, Steve, 43, explains: ‘When Dylan made the step up to full- size pitches, in the under-12 group, he began to feel a little breathless. He was fine in himself at home, but at that elite level, he found he was half-a-yard slower than before.’
In July 2011, an annual health review showed that Dylan had contracted a nontuberculous mycobacterial (NTM) infection that had damaged his lungs.
Dr Panickar explains: ‘CF patients are particularly vulnerable to infection as their mucus is so sticky.
‘you or I would be able to cough out the phlegm easily, but children with cystic fibrosis cannot do it. This causes more infections and makes it hard to treat. NTM has become a huge issue for us in the UK in the past two years for children with cystic fibrosis as it has become more prevalent and is difficult to treat.’
Over the past two years, Dylan’s health has gradually but seriously declined. The infection has scarred the upper part of his right lung, severely affecting his breathing. And barely a day passes when Dylan does not throw up, a consequence of the intravenous antibiotics used to treat the infection.
He takes the same anti-sickness tablets as chemotherapy patients but his weight has still plummeted to only five-and-a-half stone and he is now significantly underweight for a 5ft 2in teenager. Since last May, he’s been fed nutrients through a tube while he sleeps.
DYLAN is stuck in a cycle of treatments, medication and setbacks as his consultants strive to find a combination of drugs that work. As his mother, Gail, 43, explains: ‘Every time we think he might just be getting stronger, it wipes him out again.’
Dr Panickar says: ‘We have tried everything to treat the NTM, combining various antibiotics, bringing Dylan into hospital for spells between three weeks and 12 weeks, but the bug isn’t shifting. It is a major disappointment for me that he has not improved.’
And Dylan’s condition is worsening. That he is still here today is thanks only to a brutal drug regimen that begins at 5am and requires him to take up to 50 tablets a day, including enzymes to digest his food, three types of oral antibiotics, as well as intravenous antibiotics and nebulisers to try and loosen the mucus.
‘Some days he can’t handle that, or the physio that should follow, because he is too sick,’ says Gail.
He also has an antibiotic nebuliser. ‘In the past 12 months, it’s all become more difficult and it’s more and more things he has to take,’ she adds.
For a boy so active just two years ago, it has been an ordeal. His parents were proud when he got into Manchester Grammar School. He left a year ago to attend a school closer to home, after becoming too poorly to make the most of the experience.
Although he rarely complains openly, Dylan admits that on the inside, he becomes angry.
‘you ask yourself: “Why me?” But you have to fight. you don’t give in. I learned that at United.
‘I was a fit boy at the club. Now I couldn’t walk from this bed to the car outside without having a coughing fit and needing a sick bowl.
‘I love sports but I can’t do any of them. Squash, golf, paddle tennis, normal tennis with Dad — I love them all. It’s frustrating.’
As for football? Dylan turns away, his eyes moistening. ‘He’s a long way away from that,’ Gail admits.
This month, the family was given fresh hope when the Cystic Fibrosis Inspirational: Dylan with parents Steve and Gail, and sister Natasha Trust announced £20,000 funding for a ten-month stem cell research project that could correct the mutation in Dylan’s W1282X gene. It is early days, however.
A lung transplant may be a possibility. CF patients are considered for one when their lung capacity drops below 30 per cent. Dylan’s is in the early 30s, leaving him at the cruellest juncture, where he is suffering terribly — but not quite badly enough to qualify for a transplant.
Dr Panickar says: ‘ The lung function is deteriorating, and for it to drop so fast and so much at this age is extremely worrying for us.’
In the next five weeks, Dylan will be referred to Great Ormond Street Hospital, London, for an assessment.
WHILE Dylan’s consultants and nurses could not be any more gentle, there are times when it is hard to keep the faith.
The days where Dylan is sick while walking from his bed to the toilet; the days where he coughs so hard that blood spurts out; the days where he is so weak that his dad has to carry him up the stairs in their Manchester home.
‘He is a little boy,’ Steve says. ‘There are times he has said to me: “Dad, they are meant to be making me better but I am only getting worse.” As a parent, as the person that’s meant to protect him, it’s heartbreaking.’
Steve lies with Dylan every night in hospital, beside the wires and tubes. ‘I’ve taught him Chinese poker,’ Steve grins. ‘We have our box of 1ps and 2ps. Backgammon, too. We watch DVD box-sets together. We’ve just finished Breaking Bad. In his last admission, we did Lost.’
The conversation moves on and we broach the issue of life expectancy.
‘We know families whose children died as a teenager and we know people who lived into their 50s,’ says Steve, who manages his own promotional merchandise company. ‘ We don’t hide anything from Dyl, but we prefer to look up.’
When Dylan’s former coaches at Man Utd learned of the deterioration in his condition, they invited Steve to the training ground. Over a cup of tea, they reflected on his boy with the bright smile and such enthusiasm for the game.
A foundation is to be established in Dylan’s name and is likely to be launched with a fundraising dinner later this year.
There’s Something About Dylan will encourage donations to the Cystic Fibrosis Trust, the charity for which Steve has already raised close to £25,000, through a London-to-Paris bike ride, a three-peak challenge and two Tough Mudders (a 12mile race round an obstacle course).
‘Don’t forget the abseil down Old Trafford, Dad,’ Dylan chips in. ‘you were so scared. you were whining at the top: “I don’t wanna do it!” ’
Dylan giggles, putting on his best impression of a crying baby. Laughter breaks out across the room.
‘I’ll keep battling,’ Dylan says. ‘I’m not silly — I know I won’t play for United again. But if I could just chase a ball, score a goal, feel that buzz again, that would be the best.’