The WellChild Awards: Meet Britain's bravest children

In a week’s time the courageous children featured here will put on their prettiest dresses and smartest suits to be honoured at the star-studded WellChild Awards ceremony. Catherine O’Brien finds out what makes them such deserving winners

Winner: Inspirational child aged 3-6
Hope Hillis, five

Hope Hillis

'Most children want to sleep after surgery; Hope just wants to get back to the playroom'

Hope Hillis has an irresistible smile that endears her to everyone she meets. ‘It’s her biggest asset, but sometimes it is also her biggest problem,’ says her mother Sarah. ‘Doctors used to look at her beaming face and think she must be all right. Now they have learnt that that is not always the case.’

In her short life, Hope has endured more than 50 operations and 60 CT scans, and after every procedure she always manages a cheeky grin, no matter how sick she is feeling.

‘We’ve come to realise that she has an extremely high pain threshold,’ explains Sarah. ‘The first thing most children want to do after surgery is sleep. Hope just wants to get back to the playroom. It’s almost as if, having had to fight so hard for life, she is determined to make the most of every minute.’

Hope is the third of four siblings, all born prematurely. Sarah’s first son, Luke, now 13, arrived at 28 weeks. Two years later, after her first marriage broke down, she met Sam, and they had a son, Connor, who was born 15 weeks early. In November 2004, Connor died tragically aged eight months after choking and failing to catch his breath. Sarah became pregnant again but in October 2006 went into early labour with Hope. ‘Our overriding thought was that we couldn’t lose another child,’ she says. ‘We called her Hope because that was all we had to cling on to.’

Hope was born at 24 weeks weighing just 1lb 9oz. Within a couple of hours of the delivery, her lungs collapsed and she suffered a large bleed to the brain. Doctors gave her 24 hours. ‘They said even if she did survive, she would probably never walk, talk, see or hear because of the likely brain damage,’ recalls Sarah. ‘Five times they asked us if we wanted to switch off the life support. I’m so glad we gave her the chance to prove them wrong.’

Hope’s first months were spent lurching from one medical crisis to another. She suffered a perforated bowel and hydrocephalus – fluid on the brain – and needed emergency surgery for both. During her first year, she spent more time in hospital than she did at the family home in Lisburn, Northern Ireland. Several times, Sam, a 37-year-old cabinet maker, and Sarah, 31, who is training to be a primary school teacher, were told that their daughter was unlikely to survive beyond 18 months.

To everyone’s astonishment, just before her second birthday, Hope started walking and talking. ‘Every time a new word came out it was like winning the lottery,’ says Sarah.

Hope Hillis and brother

Hope with her brother Luke

Hope started nursery school at the age of three, and now attends a primary school for children with moderate learning difficulties. She can write her name, knows the alphabet and this summer won the running race at her school sports day. ‘She was vibrating with excitement and I wanted to cry, I was so proud of her,’ says Sarah.

Two-and-a-half years ago, Sarah gave birth to a second daughter, Imogen, who was also born 15 weeks prematurely but mercifully without serious complications. However, Hope’s health continues to give the family heart-stopping moments. Just over a year ago, neurosurgeons discovered that she has sustained damage to her brain stem and to the hypothalamus – the part of the brain that controls temperature and sleep cycles. She began experiencing episodes of unconsciousness during which she came close to stopping breathing. After five more months in hospital, she was given a tracheostomy (a surgical opening through the windpipe) and ventilator to keep her brain semiconscious at night while ensuring she gets enough rest. So far, it is working.

‘Most children hate undergoing surgery but Hope takes it all in her stride,’ says Sarah. ‘She runs into the operating theatre and tells each of the “blue doctors” – her name for the medics in their scrubs – where to put the blood-pressure gauge. Whatever she has to endure, I know she is going to try her hardest to get better. She’s such a brave girl, and if she can cope, then surely so must we.'

Winner: Inspirational child aged 12-15
Declan Spencer, 13

Declan Spencer and mum Alex

Declan with his mum Alex: 'Declan perseveres, never moans - he is brave beyond words'

Many teenage boys squirm at the idea of public displays of affection. Declan Spencer is not one of them. Several times a day he’ll appear alongside his mother Alex and ask for a hug. A year ago, they would have thrown their arms around each other but today Declan must wait while Alex manoeuvres his arms into place around her torso before returning the gesture. ‘He no longer has the power to lift, so his arms flop on to me like a rag doll,’ says Alex. ‘I can’t always feel his embrace but I feel the love.’

Declan, a bright, funny boy with a freckly face, is suffering from Duchenne muscular dystrophy (DMD), a muscle-wasting disease that affects around 100 boys born in the UK every year. Caused by a genetic mutation, DMD is carried on the X chromosome – women cannot be sufferers themselves but they can pass it on.

Like most mothers of DMD sons, Alex, a 30-year-old childcare worker from Leicester, had no idea she was a carrier. Declan was born perfectly healthy, the only oddity being two thumbs on one hand, which he underwent surgery to correct.

DMD sufferers lack dystrophin – a protein which helps the body’s muscles to repair and strengthen. It wasn’t until Declan started school aged five that Alex, who was then a single mother, realised her son was different. ‘All the other children would come running out at the end of the day, and he ran too, but his legs waddled from the hips rather than stretching out.’ When she sought medical help, she was told that there was nothing to worry about. A year later, Declan began falling and a paediatrician diagnosed dyspraxia – a neurological condition that affects coordination. ‘I was advised to send him to activity classes. They put him through exercises that were good for dyspraxics, but disastrous for anyone with Duchenne,’ she says. ‘He would come out crying because he was falling over so much and yet he was being dismissed as lazy.’

Finally, aged seven, Declan was given a blood test that showed exceptionally high levels of a protein called creatine kinase. DMD was confirmed. ‘I was told that he would soon lose the ability to walk and that he would die by early adulthood – maybe 18. I remember collapsing in tears, then walking out of the consultant’s office to Declan, who was in the play area of the waiting room. There was a poem on the wall which said that children with special needs are sent to those who will cherish them. I realised that all I could do was love him for as long as I had him in my life.’

Alex had separated from Declan’s father shortly after he was born, but she had a long-term boyfriend and in 2007 they married. Declan walked his mother up the aisle. ‘By then he was struggling to stay on his feet, but somehow he found the strength to do it.’ In 2008 Alex gave birth to a stillborn baby, Riley. The trauma left them shattered. Her marriage broke down and she and Declan were alone again. On Christmas Eve 2009 he took his final step. ‘He had been relying on a wheelchair more and more and he just got to the point where he couldn’t put one leg in front of the other.’ 

Declan’s latest challenge was a nine-hour operation to correct a curvature of the spine. ‘He knows that the surgery will not help him to walk again and yet he is persevering with his physiotherapy and going to school as much as he can. He never moans,’ says Alex.

The one truth Alex held back from Declan was his shortened life expectancy. But a couple of years ago, while watching a documentary, he deduced the facts. ‘He heard on the TV that boys with DMD die when they are about 18 and asked if it were true. I couldn’t lie to him,’ she says.

More recently, Declan had a late-night talk with his mother. ‘He said, “I’m worried about when I die, Mum, because you are going to be left on your own.” He is brave beyond words and now that he has won a WellChild Award, he is going to find out just how amazing he is.’

Winner: Inspirational child aged 7-11
Matthew Merritt, nine

Matthew Merritt

Matthew with Umber, his specially trained assistance dog

For most children, Monday morning signals the start of another week of school. During the past
18 months, however, for Matthew Merritt it has meant something else – an exciting four-hour train trip to London from his home in Huddersfield. You couldn’t blame his classmates if they felt a twinge of envy when he talks about his trips to the London Eye and Hamleys toy shop. But Matthew’s travel adventures are part of a journey none of them would wish to make.

He is taking part in a clinical drug trial at
Great Ormond Street Hospital and has to endure painful blood tests, challenging physiotherapy assessments and repeated injections of the trial drug. Only after several gruelling hours of being examined by medical staff does he get the light relief of sightseeing outings before travelling home.  

Matthew is the second of WellChild’s inspirational children this year to suffer from the rare and incurable muscle-wasting disease Duchenne muscular dystrophy. He was diagnosed aged 18 months after his mother Claire raised concerns that he wasn’t walking. ‘I was told he would have nine to 11 years of normal life, but that then he would be in a wheelchair and that his life expectancy was around 20,’ says Claire, now 34. ‘There are still days when I think, “Why us?” But when I look at him I know why – because he is such a cheeky, happy boy who has so much to give.’ As the strength in his legs has declined, his friends have adapted their games to ensure he is still included.

‘When they go out to play football, they make Matthew the manager,’ says Claire. ‘And when they organise races, they turn the order round so that the one who comes last is the winner.’

Matthew enjoys swimming, playing with Lego and spending time with his sisters Charlotte, six, and Caitlin, three. ‘We don’t dwell on the future because Matthew has got plenty to keep him occupied in the here and now,’ says Claire.

Matthew Merritt

'Matthew is a cheeky, happy boy who has so much to give'

However, when researchers from the UCL Institute of Child Health – the research arm of Great Ormond Street Hospital – approached the family to ask if Matthew would take part in a drug trial, they didn’t hesitate.

The drug being tested has the potential to make the protein called dystrophin which helps the body’s muscles to repair. (It is the absence of dystrophin in DMD sufferers that causes their decline.) ‘The researchers were very direct with Matthew,’ Claire explains. ‘They told him that the drug might slow down the progression of his disease, but he wouldn’t be cured. It could, though, help other children in the future. When he heard that, he said, “If it helps someone else, then it is worth it.”’

Matthew was nominated for his WellChild Award by one of his physiotherapists, Andy Hiscock, who says: ‘Matthew has moments of distress, but he always reverts back to his chatty and lovable self. What makes him even more amazing is the selflessness he has shown. He’s an inspiration to us all.’

Winner: Most caring child
Charley Holmes, eight

Charley Holmes and baby sister Scarlet

Charley Holmes and baby sister Scarlet

When not at school or out playing with friends, Charley Holmes can often be found relaxing in the pink and yellow bedroom that she used to share with her big sister Katy. At night, however, Charley struggles to settle. Her mother Paula explains: ‘She has been so grown-up, but now it is time for us to remember that she needs to be a little girl again.’

This time last year, the Holmes family, from Preston, Lancashire, had no idea that their world was about to implode. Paula, 36, and her husband David, 49, had just returned from a dream holiday in Florida with their daughters Katy and Charley. Ahead of them lay the excitement of a new baby, due in December. Shortly after the girls went back to school, however, Paula noticed that Katy wasn’t her usual self. She complained of headaches, was tearful and seemed uncharacteristically tired. Paula consulted their GP, who suggested they kept a journal of symptoms. When, within a couple of weeks, Katy started dragging her leg as she walked and her hands began to shake, she was referred to a neurologist. It was then that an MRI scan dealt the harshest of hammer blows – Katy had an inoperable tumour on her brain stem. ‘We were told that it was the worst brain tumour a child could have and that it was terminal. She had six to nine months at most,’ recalls Paula. ‘Inside, David and I were falling apart, but we knew we were going to have to swallow our tears for the sake of the girls.’

Although there were three years between them, Katy and Charley were the closest of sisters. ‘They were complete opposites – Katy was sweet-natured and innocent, Charley is high-spirited and a rascal. We nicknamed them Lady Katy and Cheeky Charley,’ says Paula. ‘But they loved each other and Charley hung on to Katy’s every word.’ David, an upholsterer, and Paula, a nursery nurse, explained to them both that Katy had a lump in her head and was going to be poorly for a while. ‘But no way could we tell Katy that she was going to die,’ says Paula. For several weeks, they managed to keep the prognosis from Charley, too, until Katy was admitted to hospital suffering from pneumonia. When warned their daughter would die within 24 hours, David and Paula faced the harrowing task of telling Charley it was time to say goodbye. ‘She sobbed and held Katy’s hand and kissed her and I thought her heart would break,’ Paula recalls.

But remarkably, Katy pulled through. ‘It was a bittersweet moment, because we had to sit Charley down and explain that although Katy wasn’t going to die today, she was not going to get better,’ says Paula. As she digested the devastating news, Charley told her parents: ‘I am not going to tell Katy that, and I don’t think you should either.’

Katy in hospital

Katy in hospital with sister Charley and their mum Paula

From that moment on, Charley did everything she could to make her sister happy. ‘She talked to Katy about the things they would do when Katy was better and listened to Katy making plans which she knew would never happen,’ says Paula. ‘They talked about going to Florida again, and going to see The Lion King – one of their favourite musicals. Every spare moment Charley had was spent playing with Katy. She put her own needs to one side and her courage made all the difference to Katy’s last months.’

In early December, Katy was able to meet her baby sister Scarlet, who was born two weeks early. But shortly after Christmas, Katy’s health deteriorated and she was admitted to a hospice. ‘Charley found it hard to cope then,’ says Paula. ‘She said she wanted to be poorly because then Katy wouldn’t be on her own when she went to heaven. She couldn’t bear the idea that they were going to be parted.’ Katy died a few days later, on 19 January. ‘Charley’s last words to her were, “Goodnight Katy, I love you.”’

Charley misses her sister terribly – Paula often hears her talking to Katy from behind the door of the bedroom they shared. She has adopted Katy’s favourite cuddly toy – a Pluto dog, wears Katy’s school coat and carries her bag. ‘It is going to take us all time to come to terms with losing Katy,’ says Paula. ‘But Charley’s WellChild Award has given us the chance to thank her for all that she did for her sister. She said to me the other day, “I am glad we didn’t tell Katy. She would have been so frightened.” Deep down, she knows she did the right thing.’

How WellChild helps

  • Prince Harry

    Prince Harry is patron of WellChild

    WellChild is the national charity for sick children and is committed to ensuring that every child in the UK, no matter what their situation, location or diagnosis, has the very best possible quality of care. The charity, which has Prince Harry as its patron, funds a team of WellChild Children’s Nurses who help to ensure that children can be cared for at home rather than in hospital wherever possible.
  • WellChild also funds a number of other projects designed to provide support to families caring for children and young people with long-term or complex care needs. This includes the Helping Hands scheme which enlists the support of volunteers from companies and organisations to tackle individual home-development projects — helping seriously ill children, young people and their families in practical ways.
  • WellChild also has a successful history of funding ground-breaking research aimed at improving treatment and care for children and young people.
  • The WellChild Awards, sponsored by GlaxoSmithKline, will take place on 3 September.

    For more information and to make a donation, go to