By Catherine O’Brien
The WellChild Awards on 16 October will celebrate Britain’s bravest children (and siblings and carers) who live with health challenges. Catherine O’Brien meets five winners whose stories touched the judges and the charity’s patron Prince Harry.
Inspirational child 4-7 years: Finley Green, 7
When Jennie Green sent her son Finley off to Beavers camp for an overnight stay this summer, she packed one rucksack with his pyjamas and toothbrush – and a further three bags full of medication, feeding pumps and emergency inhalers. ‘And then I stayed awake all night expecting a phone call,’ she says. ‘But Finley made it through till morning and when I picked him up he had the biggest smile on his face – he’d had the best time ever.’
As it happens, Finley’s camp took place in the church hall five minutes from his Yorkshire home. But in terms of milestones, this one was huge for the Green family. Finley has multiple health problems which mean that he has spent much of his short life in hospital. ‘But he is also fearlessly determined to do whatever his friends are doing, which is why we were always going to make that sleepover work if we possibly could,’ Jennie explains.
For Jennie, 35, and her husband Jamie, a 38-year-old hospital porter, parenthood has proved anything but normal. Their elder two children Jack, 15, and Olivia, 12, suffered from severe reflux as babies and had to be tube fed for much of their childhood. Finley arrived six weeks early and instantly had problems with breathing, feeding and reflux, too. ‘With Jack, doctors had thought it was unlucky. With Olivia, it was put down to coincidence. But with Finley, someone finally said, “There is probably a link here”,’ says Jennie.
All three children have now been diagnosed with hypermobile ehlers-danlos syndrome, a rare genetic condition that causes digestive problems, unstable joints and extreme tiredness. But in Finley’s case there are further complications – he has a large cyst on his brain and a cell activation disorder which leads to severe allergies. As well as being tube fed 21 hours a day (he carries his feeding pump around in a backpack), he has to take ten medications daily, do regular physiotherapy to strengthen his joints and is frequently admitted to hospital with infections. ‘He eats the occasional strawberry or piece of melon, but has never been able to enjoy food,’ says Jennie
Despite these setbacks, Finley attends mainstream school, goes to karate and swimming lessons and leaps around at home pretending to be his hero Harry Potter. ‘He has this drive to carry on regardless and only stops when he is exhausted,’ Jennie continues. ‘He inspires me every day by never complaining – and I know I’m biased, but his smile is contagious.’
Four years ago, Jennie decided to use her experience in caring for Finley, Jack and Olivia to train to be a nurse. She is now a specialist in percutaneous endoscopic gastrostomy (PEG) nursing. ‘It means when I say to parents of children like Finley, “I know how you feel,” I really do,’ she says. ‘But none of us can know exactly how it feels to be Finley. He’s incredibly brave, which is why we are so glad he is going to have a WellChild award to prove how amazing he is.’
Inspirational Child 7-10 years: Katie Ward, 10
Katie Ward recently launched her own YouTube channel. She’s called it Sparklefish K because she loves sparkles and fish, and in a highly entertaining ‘25 facts about me’ clip she also reveals her favourite movie (Beauty and the Beast), author (Jacqueline Wilson) and colours (pink, purple and white). What you won’t discover by watching Katie online is any mention of the formidable health problems she faces every day.
‘Katie doesn’t waste time feeling sorry for herself,’ says her mother Ruth. ‘She focuses on what she can do rather than what she can’t – and that is her strength.’
Katie, who lives in Colchester, Essex, with Ruth, 43, and sister Bethany, 17 (her eldest sister Rebekah, 22, lives in London), was born with spondyloepiphyseal dysplasia congenita (SEDc), a rare bone growth disorder that results in dwarfism. The most visible part of her condition, which is caused by a genetic mutation, is shortened limbs: ‘She is very little and is unlikely to reach more than a metre in height,’ explains Ruth.
But Katie has also had to contend with other debilitating physical challenges. At the age of two she had spinal surgery to correct neck bones that had not formed properly. The operation saved her life but left her paralysed from the chest down. This paralysis has, in turn, led to bladder and digestion problems which mean that – after many complications and extended hospital stays – Katie has to be fed intravenously. ‘She can barely eat at all, which is upsetting – she really misses chicken nuggets and chips as a teatime treat,’ says Ruth. ‘But she’ll tell you there is no point being sad and miserable when you could be concentrating on having fun.’
Katie attends Bishop William Ward Primary School where she sings in the choir and loves English (but is not so keen on maths). Last year, she joined a swimming club: although she had to use a snorkel to breathe because she couldn’t lift her head out of the water, she quickly achieved her 50-metre badge and has gone on this year to secure her 100-metre award.
‘The courage it took her to get into the water was extraordinary – and that is one of the reasons why I felt she deserved to be considered for a WellChild award,’ says Ruth. Ruth also nominated her daughter to highlight Katie’s thoughtfulness for others. ‘She worries that I have to spend so much time looking after her. But I tell her she is the best job in the world.’
Most caring young person: Luis Singh-Eyley, 16
Ask Luis Singh-Eyley for his happiest memories and he will tell you about his family holidays in Whitby, Yorkshire, with his younger brother Theo, ten. Although Theo has many medical challenges – he has quadriplegia cerebral palsy, epilepsy, feeding problems and is registered blind – if someone lifted him out of his wheelchair, he could sit at the water’s edge. ‘He loved feeling the sand between his toes and giggling as the waves came in,’ recalls Luis.
Sadly, Theo’s deteriorating health means that trips to the seaside are no longer feasible. So some time ago Luis decided to bring the seaside to Theo. By scouring Ebay, he found nautical bric-a-brac – sailing ships, seashells, miniature beach huts and a lifebuoy – and embarked upon a bedroom makeover. ‘Luis has always gone that extra mile for his brother,’ says mum Denise. ‘And Theo loves his new room because it helps him to relive so many good times.’
Luis’s interior decorating skills are just one example of the countless kindnesses that have led to him being declared a winner of this year’s WellChild Most Caring Young Person award. ‘Luis is the most special brother in the whole world to Theo,’ Denise explains. ‘And now WellChild has been able to tell Luis that on his behalf.’
Luis and Theo are the youngest of Denise and husband Michael’s six sons. The four elder boys – Michael (known as MJ), 31, Robby, 28, Sam, 25 and Oliver, 21 – never experienced any health issues, and Luis, who was born ten weeks premature, overcame breathing problems and thrived. However, while pregnant with Theo, Denise developed placenta praevia – a complication that can put mother and baby at risk. After being delivered by emergency caesarean at 29 weeks, weighing only 2lb 2oz, Theo suffered five strokes in a matter of days. ‘We were told he wouldn’t make it beyond his first week but six months later we brought him home and that is when it became apparent how much our lives were going to change,’ says Denise.
Theo cannot breathe or swallow unaided. He has had 37 operations to resolve complex digestion problems and is frequently admitted to hospital with infections. At the family home in Chesterfield, Derbyshire, he needs round-the-clock care: his parents take it in turns to sit by him through the night because of a choking risk – and that, according to Denise, ‘means sadly Luis can hardly ever be our number-one priority’.
Yet far from demanding attention, Luis has become his parents’ indispensable helper and Theo’s closest ally. ‘He was just five when Theo arrived and, overnight, he had to go from being looked after to breakfasting and getting dressed by himself,’ Denise says. ‘Now Luis cooks Sunday lunch for us at weekends, does the washing, pegs it out, and even vacuums the house.’
Best of all for the Singh-Eyleys is witnessing the loving relationship between Luis and Theo. ‘The attachment between them is amazing,’ continues Denise, 51. ‘He helps with Theo’s physio, reads bedtime stories and gives him lots of snuggle time.’
Luis, who is contemplating a career in nursing or social care, has given talks at his school to raise awareness of people with disabilities and helped raise thousands of pounds for the hospice where Theo receives palliative care. He will be attending the WellChild Awards ceremony with his parents who nominated him. ‘It’s quite a shock to win,’ he says. ‘I know my parents feel I miss out because of Theo but I love having him in my life.’
Inspirational young person 11-14 years: Sasha Burrell, 13
Sasha’s 12th birthday weekend in February 2016 began with her feeling bunged up and shivery. She opened her presents and stoically hosted a swimming party at her local pool in Hertfordshire. But once it was all over, she hunkered down in her dressing gown. ‘She had a hacking cough and kept complaining that she couldn’t get her hands and feet warm,’ recalls her mum Claire.
When, late in the evening of the following Tuesday, Sasha started gasping for breath Claire and her economist husband Andrew realised that something was terribly wrong. But it wasn’t until they got her to hospital that doctors discovered the red, blotchy rash across her chest. Sasha had sepsis, a condition in which the body’s immune system goes into overdrive and, if untreated, rapidly leads to organ failure and death.
Thankfully, Sasha did not become one of the 44,000 people who lose their lives to sepsis every year. But nor did she emerge unscathed. She suffered a cardiac arrest shortly after being admitted to King’s College Hospital in London and, two weeks later, had to have both legs amputated below the knee after gangrene set in.
Although tearful on being told she was going to have to have drastic surgery, Sasha accepted the need for treatment. ‘I was promised a kitten to make me feel better, and now we have Mittens,’ she says.
Sasha has won a WellChild award having been nominated by one of the medical team who saved her. Paediatrician Dr Mo Akindolie of King’s says: ‘Sasha is a truly phenomenal human being – a fighter and shining example of someone who has risen above her circumstances after enduring a life-threatening illness and life-changing surgery. She has deeply impacted everyone who has had the privilege of meeting her.’
Sasha, like her elder brother Yuri, 16, came to the UK from Russia as a baby after being adopted by the Burrells. ‘We have since discovered that Sasha had no antibodies for the meningococcal bacteria that cause meningitis and sepsis conditions – which may go back to her early childhood,’ says Claire, 63.
After her surgery in early March 2016, Sasha was fitted with two pairs of prosthetic legs – one for everyday wear and blades so that she could learn to run. She needed intense physiotherapy before she could use these, but by the end of the summer term was back at school and taking part in the sports day obstacle relay. In September, at the suggestion of her PE teacher, she took up trampolining, and within six months had so finessed her technique that she came second in a national British Schools Gymnastic Association competition.
‘Trampolining has opened up a whole new world for Sasha and given her confidence and focus,’ says Claire. ‘She’s an action girl who loves to be on the move. And not once has she said, “Why me?” It is we adults who have had to come to terms with what she has been through. Sasha just embraces life and is an inspiration to us all.’
Outstanding professional award: Shirley Moore, 53
Many families are forever grateful to the medical professionals who care for their sick children. But they also encounter staff whose dedication makes an immense difference in other ways. This year, a WellChild award is being made to chef Shirley Moore, who goes above and beyond to ensure young cancer patients at the Royal Marsden Hospital in Surrey have mouthwatering food to eat and thereby the vital nutrition they need for recovery.
As paediatric catering supervisor on the McElwain Ward at the Oak Centre for Children and Young People, Shirley runs the seven-person team that feeds more than 20 inpatients, many of whom are desperately ill or recovering from life-saving bone-marrow transplants. And she also cooks for up to 40 children each day who come in for chemotherapy and other procedures.
Cat Kayum, from Lewisham, was one of the mums who nominated Shirley after her son Louis, now five, underwent 17 months of successful treatment for the rare cancer neuroblastoma. ‘Louis often felt sick but Shirley was always willing to suggest new things to try and was so patient,’ she says. ‘Nothing is too much trouble for her when it comes to trying to get the children to eat.’
Shirley has been a cook since she left school at 16, and worked in pubs and restaurants before coming to the Royal Marsden 12 years ago. A mother of four, she found the job eye-opening. ‘The children amaze you every day with their bravery, and so do the parents,’ she says.
It is the children, Shirley explains, who have been her teachers. ‘The drugs they have to take change their taste buds, so chocolate can taste like metal and they might crave salty foods or spicy dishes. They tell me what they need and between us we work it out.’ Everything is cooked from scratch and among Shirley’s favourites with children are chicken dippers, spaghetti bolognese and fish-finger sandwiches. ‘The secret is to make eating fun,’ she says. ‘If you tell children to eat broccoli, they are going to refuse. If you ask them to eat little trees, they’ll scoop them up.’
When meal times are over, Shirley runs pizza- and biscuit-making classes, and on her day off she tends the small ‘gnome garden’ outside the ward. ‘I’m bowled over and humbled to have won,’ she says. ‘I feel lucky to have a job that I love.’
HOW WELLCHILD HELPS – AND HOW YOU CAN, TOO
This year is the 13th WellChild Awards, to be held on 16 October at the Royal Lancaster Hotel in London, sponsored by GSK. The charity works to ensure that children and young people living with serious illness have the best chance to thrive – at home with their families.
The charity, of which Prince Harry is patron, funds a team of WellChild nurses who provide practical and emotional support to children and their families on the journey from hospital to home. Volunteers help transform family homes and gardens into better, safer places.
Through the WellChild Family Tree, families of seriously ill children can chat and support each other online and through local face-to-face groups. WellChild also funds and facilitates research, and campaigns to influence future policy and practice.
An estimated 100,000 children and young people across the UK are living with serious health needs, and advances in medicine and medical practice mean these numbers are growing every year. Your help could enable WellChild to improve many vulnerable lives.
To make a donation, text WLCHLD17 and the amount you wish to donate to 70070 (eg, to donate £10 text WLCHLD17 £10), or visit wellchild.org.uk/donate.