The WellChild Awards: Meet Britain's bravest children

The WellChild Awards: Meet Britain's bravest children
By CATHERINE O' BRIEN

Last updated at 8:01 PM on 27th August 2011


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The WellChild Awards, supported by YOU, celebrate the courage of severely ill children and their carers. Catherine O’Brien meets four of this year’s winners, who are all hugely excited about meeting the charity’s patron Prince Harry at this Wednesday’s glittering awards ceremony


Winner Bravest Child aged 3-6 (male) Harley Lane, six


Harley with his mother Sam. 'He's amazed us all,' she says

Harley is as boisterous as any other little boy, but if ever he wants quiet time he goes into his back garden and cuddles his pet rabbit Happy. His mother Sam watches at a respectful distance and, as she does, she invariably pinches herself. For Harley is her miracle child who so easily might not have been here at all.

Two and a half years ago, Harley was struck down by meningitis, which developed into deadly meningococcal septicaemia within hours. His heart stopped three times and doctors told Sam and her husband Adam that the only hope of saving their son’s life was to amputate both his arms and his legs. ‘I remember thinking, “How can he survive such drastic surgery?”’ says Sam. ‘But he’s amazed us all. He just gets more determined every day.’

It was in May 2009 that Harley, then three, from Stockport, Greater Manchester, came over drowsy and feverish. As an asthma and epilepsy sufferer, he needed close monitoring and Sam, 25, a former chef, took him to the A&E department of her local hospital. Doctors diagnosed an upper airway infection and sent him home with painkillers, but just hours later Harley had developed a deep purple rash on
his neck and the side of his face. ‘I knew it had
to be meningitis,’ says Sam. ‘And this time
when I got to the hospital, an entire team surrounded him within minutes.’

Three cardiac arrests within 12 hours led to fears that, even if he survived, Harley could be brain damaged. He was kept on life support for two weeks before Sam and Adam were asked for consent to amputate first Harley’s legs below the knees, and a day later, his arms below the elbows. ‘There was no other option,’ says Sam. After several more days in a drug-induced coma, Harley woke up. ‘I’ll never forget the moment when he came off the ventilator and said “Mummy”. It was only then that we realised our baby was still with us after all.’

‘Harley has survived the most unimaginable challenges – and he pushes himself further every day’

Sam and Adam, a 22-year-old ex-publican who now helps care for Harley full time, still had to face the heartbreaking task of telling their son what had happened. ‘We explained that he had had a nasty bug and that meant that his hands and feet had to be taken away,’ says Sam. ‘He did cry a few nights later and said he wanted his hands back, but that only happened once. He began physiotherapy and it has been hard for him learning to walk all over again with prosthetics, but he pushes himself a little further every day.’

At school Harley uses a walking frame or wheelchair to get around, but at home he prefers to shuffle on his bottom or hold on to the furniture for support. He has already learnt to clean his teeth and get dressed independently using his prosthetic hands, and has no trouble mastering the Nintendo Wii console so that he can play with his four-year-old brother Tyler.

Harley was nominated for his WellChild award by Christine Hughes of the Meningitis Trust. ‘Harley’s fighting spirit is an inspiration,’ she says.

He will have to undergo further skin-grafting surgery, but his parents are now undaunted about his future. ‘Harley’s already survived the most unimaginable challenges,’ says Sam. ‘And every day we learn from him that you don’t have to let anything hold you back.’



Winner Bravest Child aged 3-6 (female) Sophie Cooper, five


Sophie (far right) with her twin Erica and younger sister Kyla (left)

Like all parents, Leanne Cooper likes to ask her children each day what they’ve done at school. In the case of her five-year-old daughter Sophie, however, communication needs to be approached with ingenuity.

Sophie has cerebral palsy, as does her twin Erica. But whereas Erica’s condition is mild, Sophie has no speech. So Leanne and her husband Craig have worked with staff at Sophie’s special school near their home in Lincolnshire to overcome the problem.

Their solution: a recording device which her teachers speak into and she operates. ‘Every day she brings the machine home and when I ask, “What did you do at school today?” she presses the play button and we listen to the teachers explain what she has been doing,’ says Leanne. ‘The smile
on her face as she hears her teacher talking about all she has done never fails to light up my day.’

This small but significant ritual is one that former marketing executive Leanne, 29, could barely have dreamed of when Sophie and Erica were born at just 24 weeks gestation in July 2006. Erica was delivered at 1lb 9oz while Sophie weighed 1lb 6oz. Both had to be incubated. Erica needed emergency bowel surgery but then stabilised; Sophie suffered a bleed on the brain. They were finally allowed home after four months.

In March 2007, doctors told Leanne and Craig, 31, who used to be an RAF weapons instructor but now helps to care for his daughters full time, that Sophie had cerebral palsy. ‘She couldn’t hold up her head or roll on the floor, but the diagnosis still came as a crushing blow,’ says Leanne. She and Craig had learnt earlier that day that they were expecting their third daughter Kyla, now aged three. ‘It was a day of emotional extremes,’ she says.

Sophie’s cerebral palsy has turned out to be severe, and as well as being unable to talk, she cannot walk or sit unaided. She also has epilepsy, a hearing impairment and chronic lung disease. She will need 24-hour care for the rest of her life.

‘One morning last year, I woke up and it was all too much. I had a breakdown,’ says Leanne. Her GP arranged counselling, but the best medicine has been Sophie herself, who is showing remarkable progress at school and has learnt to communicate through eye pointing. ‘We have a yellow smiley face for “yes” and a sad face for “no”. I used them in a shop the other day to buy her a hair clip and when she chose the one she wanted, rather than me choosing for her, I had tears in my eyes,’ says Leanne. ‘Life can be hard, but Sophie is still giggling and that gives us hope for the future.’



Winner Bravest Child aged 7-11 Hanna Bricklebank, ten


Hanna has been 'incredibly brave throughout her life'

Hanna likes reading, Brownies, Hello Kitty, collecting keyrings and anything with owls on. A few months ago, this list would also have included gymnastics, which has been a huge passion for Hanna since the age of three. But earlier this year she was given devastating news: weakened muscles in her right wrist were worsening and unless she gave up gymnastics and allowed them to heal, she could face life-long problems with the use of her hand.

Hanna’s prognosis stems from a rare condition called vacterl. The term is a medical definition for a range of abnormalities which, in Hanna’s case, include a flat trachea (windpipe), smaller than normal airways, only one kidney, and a hole in the heart, as well as the thumb on her right hand having no knuckle joint when she was born. At three she underwent corrective surgery and, explains her mother Fiona, ‘For years it didn’t cause any problems, but last year Hanna started getting pains in her wrist.’

Hanna, who lives in Nottingham, where her father Tony, 40, is a deputy head teacher, was diagnosed with vacterl as a baby when she choked on her first feed. Tests showed that her oesophagus was malformed and she needed an operation to enable her to digest food. Other complications came to light and her parents, whose second daughter, Lotty, is now three, feared that Hanna wouldn’t lead a normal life. Instead, says Fiona, ‘She tells people that having vacterl means she is not normal but special, and she isn’t going to let it beat her.’

Although Hanna is small for her age, she has exceeded her developmental milestones. She plays the piano, dances and has just been placed on the gifted and talented register at school, which is particularly impressive as she is susceptible to chest infections and has had to miss weeks of schooling at a time.

Having to give up gymnastics was the greatest test so far of Hanna’s indefatigable spirit, but she has bounced back by joining a drama group instead. Says Fiona, ‘Hanna has been incredibly brave throughout her life and does everything with a smile.’



Winner Bravest Young Person Connor Rowntree, 17


Connor, who 'has shown immense courage', with his mum Carol

Many teenage boys watch action-hero movies and secretly imagine themselves in the starring role, but Connor has found himself the subject of a film for which no one would wish to audition – a documentary spelling out the terrible price he has paid for playing with fire.

Two years ago Connor suffered horrific burns to 90 per cent of his body while he and a friend were messing about with aerosols and petrol. When an aerosol exploded, flames engulfed Connor, turning him into a fireball. He was given a four per cent chance of survival and spent 11 months in hospital undergoing more than 100 skin grafts and operations. Today, remarkably, he is managing to rebuild his life. And he sets aside time to tell his story in schools.

The youngest of four children, Connor lives in Sunderland with his parents Neil, 45, and Carol, 46, but was visiting a friend one Sunday in May 2009 when he had the accident that almost cost him his life. Only the soles of his feet and top of his scalp were untouched by flames. His father, a former chef, was one of the first to reach the scene. ‘Connor was unrecognisable. I didn’t realise it was him until he screamed, “Dad, help me.”’

Connor was rushed to hospital. Carol, a cashier in a local betting shop, dashed to his bedside. ‘Every day for eight months we woke up not knowing whether he would make it,’ she says.
Connor’s skin had to be painstakingly regenerated from
the tiny patches that remained unscathed, but his recovery was hampered by infections, kidney failure and a collapsed lung. Finally, in January 2010, he was allowed home. He has had to relearn how to feed himself and walk, and he still needs to wear a pressure suit and mask at night to protect his healing skin. Although he’s undergoing further plastic surgery to his face, he will be permanently disfigured.

Connor, who has since returned to college where he is doing a car maintenance course, didn’t hesitate when Tyne and Wear Fire and Rescue Service asked him to help make an awareness DVD. ‘It’s hard reliving what happened,’ he says. ‘But if it stops one person injuring themselves, it has to be worth it.’

Fire safety officer Julie Mullen, who nominated him for the WellChild award, says: ‘Connor has shown immense courage in telling his story and it is humbling to see the effect he is having on other young people.’




HOW WELLCHILD HELPS

WellChild is the national charity for sick children and is committed to helping children and young people — and their families — who are seriously ill or have complex health conditions. The charity focuses on three areas:

CARE The team of WellChild children’s nurses helps to ensure that children around the country with complex care needs can leave hospital and return home.
SUPPORT The WellChild Helping Hands scheme enlists volunteers from companies and organisations to tackle individual home development projects for families with a sick child.
RESEARCH WellChild has invested more than £20 million in ground-breaking children’s health research projects.
For more information and to make a donation, go to wellchild.org.uk



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