When Meghan and Harry met Britain’s bravest children at this month’s WellChild Awards, which celebrate young people living with serious challenges, it was certainly a night to remember. Margarette Driscoll meets four of the inspirational winners.
The world’s best big brother
Jacob Granger, 18, Most Caring Young Person
For his sister Melissa’s last birthday, Jacob Granger organised a treasure hunt. He spent days wrapping up 200 plastic balls in brightly coloured tissue paper, then placed them around their family home in St Helens, Merseyside.
They were for Melissa’s present – a ball pool for her sensory room, a play area filled with sparkly lights and soft furnishings designed to enhance her senses of hearing, sight and touch.
‘On her birthday, I walked behind her, hinting where to look. Then we put all the balls in the pool and tried it out,’ he says.
‘The balls completely cover her. She loves it and it’s a lot of fun. Unfortunately, she’s discovered she can chuck them at me – she has a surprisingly good aim.’
Melissa, 15, has Angelman syndrome, a rare genetic condition that causes developmental delay and intellectual impairment. Melissa cannot speak, needs help to eat and to use the bathroom and suffers epileptic seizures. But she barely sits still. ‘I can put a book and crayons out for her and after two seconds she’s gone. It’s very full on,’ says her mum Kathryn, 53.
Jacob was almost three when Melissa was born. She was a very unsettled baby, suffering from reflux and severe colic but Jacob has been the kindest brother imaginable. Kathryn says, ‘It was tough for him because I was so exhausted with Melissa but he’s such a lovely, laid-back boy, he never complained. The doctors said Melissa would probably never walk but Jacob taught her to crawl, by crawling round himself, and she eventually followed.’
And he is still helping. He has programmed an iPad for Melissa with photographs of different rooms around the house and a variety of activities so she can now press a button to indicate what she would like to do.
Jacob and Melissa were both looking forward to the awards but Melissa was particularly excited to meet Meghan. She took her a Peter Rabbit toy as a present and when the royals came over to chat, they went to shake hands, but Melissa then hugged them both. Kathryn says, ‘Jacob explained how much Melissa likes hugs and Prince Harry congratulated him on the award and said how brilliant he was with her. It was fun and lovely to meet them.’
Jacob leaves for university soon and Kathryn says the WellChild Award, which is sponsored by global healthcare company GSK, is the best send-off he could have.
‘It celebrates everything he has done and still does for Melissa. She couldn’t have a better big brother.’
The ballerina who raises the barre
Chloe Henderson, 10, Most Inspirational Child aged 7-10
There could be some special guests at Chloe Henderson’s house soon. After asking Prince Harry and Meghan what their favourite Disney films were – The Lion King and The Little Mermaid – the Prince said they would all need to have a movie night in together.
Like lots of little girls, Chloe dreamt of being a ballerina but even going to dance lessons seemed impossible. Chloe, who has cerebral palsy, could not walk and it seemed at first that no ballet school near her home in Gloucester would take her.
But mum Louise Ellis persisted and found a dance teacher willing to give Chloe a go. She started lessons, clinging to a support frame, and by the age of five became the first seriously disabled child to take the Royal Academy of Dance’s pre-primary exam.
Louise says, ‘I sat outside, feeling sick. Her teacher and two examiners came out in tears. I assumed they were going to tell me she’d failed. I was all ready to say to Chloe, “It really doesn’t matter; how amazing you got the chance…” when they said, “She’s passed!”’
Chloe still loves to dance and her hobby has helped her build up a huge amount of strength and confidence. Thanks to that, she has been to Rainbows [the 5-7 age group for Girl Guides] and accomplished everything the others in the group have done.
Chloe and her twin brother Jack were born ten weeks prematurely, at 30 weeks, and both suffer from significant disabilities. They were taken into care at just a few weeks old and had a number of foster placements before they found a home aged three, with Louise, 55, and her husband Brad, 57, a retired motorcycle mechanic.
Jack, who was suffering from epilepsy and confined to a wheelchair, was calm and placid but Chloe’s behaviour was challenging. ‘She had attachment issues from being moved from place to place. She would refuse to eat then steal food, or eat so slowly it took half the day. If she was wearing yellow shoes she would swear blind they weren’t yellow,’ says Louise, a former nurse. ‘We thought, “OK, let’s use that fiery behaviour to help you get on with your life.”’ They channelled Chloe’s determination into dance and Louise says she ‘blossomed’.
On top of her school work, Chloe has hours of physiotherapy every week. She usually walks with two sticks but, in another magnificent effort of will, she recently threw them aside and managed to take 150 wobbly – but unaided – steps. Jack’s health is still very fragile and Louise says, ‘Chloe is the most amazing sister. She worries about him but never feels sorry for herself. She so deserves this award; she’s done the hard work and turned it around.’
The musical star who caught Meghan’s eye
Jake Stacey, 12, Most Inspirational Child aged 11-14
When Jake Stacey was born all seemed fine: he smiled, sat up and started pulling himself up, preparing to walk. Then, aged 18 months, he stopped standing. His little legs retracted under him and his physical development seemed to go backwards. He was referred to Great Ormond Street Hospital, London, and diagnosed with a form of muscular dystrophy. His mum Lora was told he would spend his life in a wheelchair. But it didn’t hold him back as Jake’s personality shone brightly, enabling him to achieve his stage-star dreams.
‘He is an amazing character,’ says Lora, from Canvey Island, Essex. ‘It is a struggle. We were told he wouldn’t be able to sit up on his own or walk, he might need feeding tubes and breathing apparatus. But he was still Jake and I thought, “We can do this.” He has done well. He’s very independent. He has a motorised trike that he uses to get to and from his mainstream school. He’s a normal 12-year-old, just with wheels.’
Jake’s theatrical flair has always stood out. As a toddler he had a talent for picking up song lyrics and, aged four, he joined the Mushroom Theatre Company in Rayleigh, Essex – an integrated theatre company that brings together able-bodied and disabled children to sing and dance outside school.
Jake set his heart on appearing on a major stage and auditioned for School of Rock and Matilda. However, many theatres, even if accessible for audiences, can’t take a wheelchair backstage. But he kept trying and last year won the lead role in The Christmasaurus at London’s Hammersmith Apollo. ‘He’d set his heart on that role. The lead in the story is a boy in a wheelchair, which never happens,’ says Lora.
And his performance won him a royal fan. Lora says that as soon as Meghan saw him at the WellChild Awards she came over and said, ‘You were in The Christmasaurus!’ Jake says. ‘I really enjoyed performing. You get so lost in the show you forget people are watching.’ His dad Richard was in the audience, while Lora was backstage, on hand to help. He sang a solo and I was next to the stage, sobbing, a complete wreck. I kept thinking, ‘That’s my baby!’ she says. ‘He came off stage with the biggest grin on his face. I’d never seen a smile like it.’
The showjumper riding high
Evie Toombes, 16, Most Inspirational Young Person aged 15-18
Evie Toombes has a special bond with Daisy, her beautiful chestnut horse. Evie was born with lipomyelomeningocele, a form of spina bifida that limits her mobility and causes bladder and bowel problems, and Daisy can sense when she is feeling down. ‘She becomes very gentle,’ says Evie. ‘I love the feeling of freedom I get when I’m with her. I can’t walk very far so Daisy becomes my legs.’
Evie lives with her mum Caroline, a property manager, and dad Russell, a property developer, in Skegness, Lincolnshire. She competes at a high level as a para rider in showjumping and dressage. The teenager won a WellChild Award for the courageous way in which she has faced up to her challenges – her motto is ‘find a way not an excuse’ – but also for her commitment to improving life for others.
As a child, Evie was very secretive about her condition, but when it dawned on her that there must be many children like her, feeling lonely and distressed, she decided to speak out. And she has described the ‘relief’ of opening up about such a taboo subject.
She also uses her humour to help her cope. Asked recently to name her proudest moment, she said it was, ‘Riding into the international arena in Munich in a Pampers nappy’ (due to her bowel problems). Evie now gives talks about her condition in schools and is about to publish a book aimed at under-tens called Lucy Goes to School which tells the story of a
little dog with a dodgy leg and leaky bladder who feels left out until her classmates rally round to help.
Evie also has plans to offer therapeutic sessions with her pet Shetland ponies, Jay and Beyoncé, to children in need. ‘Stroking or hugging an animal is a huge comfort when you are feeling down,’ she says. ‘It really helps me when I am struggling and other children could benefit, too.’
She is thrilled that all her hard work led to the WellChild Award: ‘I do what I do because I enjoy it but this is a huge bonus,’ she says. It has also given her a boost at a difficult time, after spending much of the summer in hospital with gastroparesis – paralysis of the stomach. The condition, which is not thought to be related to her spina bifida, came on two years ago and has resulted in Evie being fed through a nasal tube. Her gut is so sensitive she often cannot keep down the rich, liquid food, meaning she has lost a lot of weight and now weighs the same as she did aged 11.
‘Every little thing she does is a huge effort, but she never gives up. I am so proud of her,’ Caroline says.
And Evie was delighted to have Harry and Meghan at the WellChild Awards as it gave the winners a real boost. She says, ‘It’s fantastic they’re involved and they had so much time for everyone. It’s not just a job they’re doing, they are really interested.’
How WellChild helps and how you can, too
The 14th WellChild Awards ceremony, in association with GSK, was a fabulous event held earlier this month at the Royal Lancaster Hotel in London, attended by the charity’s patron the Duke of Sussex and his wife, the Duchess of Sussex. As well as recognising the courage of children facing the daily challenges their illness brings, the awards also honoured amazing brothers, sisters, nurses, doctors and other professionals who go the extra mile to make the lives of the children as happy and fulfilled as possible.
WellChild ensures that children and young people living with serious illness have the chance to be cared for and thrive at home with their families. The charity 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.
The WellChild Family Tree enables families of seriously ill children to chat and support each other online or 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 thanks to advances in medicine and medical practice they are living longer.
Your help could enable WellChild to improve vulnerable lives. To make a donation, text WELL33 and the amount you wish to donate to 70070 (eg, to donate £10 text WELL33 £10), or visit wellchild.org.uk/donate.