As the search begins for 2018’s WellChild Award nominations, Catherine O’Brien meets three of last year’s winners, whose exceptional courage won over the judges and the charity’s patron Prince Harry.
Winner: Erin Cross
Erin describes herself as ‘one of a kind’ and it is hard to imagine that anyone who has met her – including Simon Cowell, Ant and Dec and Amanda Holden – would disagree. The cancer specialists who have witnessed her battling for survival against all odds can certainly vouch for Erin’s indomitable spirit.
Erin, now aged seven, was just two when she was diagnosed with acute lymphoblastic leukaemia and she has come close to losing her life several times. ‘Erin is a superstar,’ says nurse Claire Bunny, one of the team that helps care for Erin at the Countess of Chester Hospital in her home city. ‘She’s a role model to other children – and she shows us all that there is hope.’ Erin’s courage made her a clear winner at last year’s WellChild Awards, where she added Prince Harry to her roll call of famous encounters.
Erin’s parents Sarah, 43, a former GP surgery receptionist, and her teacher husband Antony, 41, endured eight years of fertility treatment before their only child was conceived via IVF. After Erin’s birth in August 2010, there was no inkling of ill health until November 2012, when she suffered from a series of chest and ear infections that wouldn’t clear with antibiotics. Then one evening, Erin started gasping for breath. Sarah and Antony rushed her to A&E, where a blood test indicated that leukaemia was likely.
Further tests confirmed the diagnosis and Erin was admitted to Alder Hey Children’s Hospital in Liverpool for an intensive course of chemotherapy, which offered an 80 per cent chance of a cure. ‘Her hair fell out and she couldn’t walk because the steroids she had to take inflamed her joints,’ Sarah recalls. ‘Yet her infectious laughter and positivity kept us going.’ During her treatment, Erin became an ambassador for the hospital and helped to raise £24,000 for the oncology unit. She was also involved in raising awareness of blood donation, having by then benefited from many transfusions herself.
In April 2015, Erin was declared cancer free and the family enjoyed almost a year of respite. However, in March 2016, her monthly blood test showed abnormalities. She was relapsing and needed to undergo more chemotherapy to get rid of the cancer cells before she had a bone-marrow transplant. ‘The trouble was, the chemotherapy didn’t clear the leukaemia,’ says Sarah. ‘We were on the brink of being told there could be no transplant and palliative care was the next step, but we couldn’t accept that as the only option.’
Through online research, Sarah discovered that an experimental treatment called CAR T-cell therapy – in which the patient’s T-cells are re-engineered in a lab to attack cancer cells before being re-infused – was getting more than 90 per cent of children like Erin back into remission. Trials in the UK are in their infancy, but Erin could be treated in Seattle – at a cost of £140,000.
Thanks to a crowdfunding effort via social media and through their local community, the Crosses raised the cash. ‘The support we had was unbelievable,’ says Sarah. Still, Erin’s treatment was taking a toll on her body and she suffered a stroke that left her temporarily paralysed. She recovered enough to make it to Seattle to undergo the therapy, but then suffered a seven-hour seizure, which left her in a coma for almost a week. ‘We were told that Erin would very likely be brain damaged and may not survive,’ says Sarah. ‘So when she came round and was laughing and talking within a couple of hours, it felt like a miracle.’
Thankfully, the CAR T-cell therapy was successful and Erin had a bone marrow transplant in December 2016. She faced more hurdles last year after developing GvHD (graft versus host disease), which meant six weeks back in hospital. Amid that setback, a high point was receiving her WellChild Award (sponsored by GSK). ‘We tell Erin how brave she is, but to receive that endorsement from others spoke volumes,’ says Sarah. ‘She had the time of her life and it’s that happy memory, rather than thoughts of all the tough times, that has stayed with her.’
Winner: Inspirational Child 7-10 years, Marni Ahmed
Like many other ten-year-old boys, Marni enjoys watching American wrestling, playing Pokémon games and listening to hip-hop. But his life is far from normal.
From birth, Marni has been fighting harlequin ichthyosis, a rare, life-threatening condition that makes his skin red raw and cracked. He has to have cream applied at two-hourly intervals; even at night, his skin is moisturised every four hours and his exposed face and hands need applications several times an hour.
‘Marni is funny and cheeky and just wants to be like any other kid, but it has been hard for some to see beyond his appearance,’ says his mother Gulzeab. All that changed, however, when Marni won a WellChild Award and attended the star-studded awards ceremony in London last October. ‘Now everyone knows about me and I don’t get comments,’ he says. Gulzeab adds: ‘The award is the best thing that has happened to Marni. He tells people now that he’s cool and brave – and that is exactly what he is.’
Marni lives in Leeds with Gulzeab, 42, a former nursery nurse, dad Zaheer, a 44-year-old marketing manager, sister Aleena, 20, and brother Zayyan, 18. When he was born prematurely after a difficult pregnancy, it was evident from his torn and bleeding skin that he was seriously ill. ‘The skin was so tight across his chest, he couldn’t breathe properly,’ Gulzeab says.
Harlequin ichthyosis is caused by a genetic defect – if both parents are carriers, their children have a one-in-four chance of having the condition. It’s extremely rare – affecting around five children born in the UK every year – and is so called because the skin forms diamond-shaped thickened plates.
At six weeks, Marni had plastic surgery on his cracked eyelids. Since then he has had countless hospital admissions – for surgery and to help fight the infections he suffers because his skin lacks the fats that protect against bacteria. His clothes have to be changed three times a day, his bedding once a day and his room is cleaned daily. ‘At times he has been so unwell, we thought he wouldn’t make it,’ says Gulzeab. ‘But he often shrugs off pain in his hands and feet that would make others weep.’
Marni was nominated for the WellChild Award by Caroline James, his Children’s Continuing Care case manager in Leeds, but Gulzeab was initially hesitant about it. ‘Marni has many caring friends, but on bad days when children have called him names at school, he just wants to withdraw so we worried that any attention could backfire.’
Instead, the award has had the reverse effect. Marni met Prince Harry before spending the evening sitting with grime star Stormzy, who now sends him WhatsApp messages. ‘That recognition has been the boost that Marni needed,’ says Gulzeab.
Marni is currently managing 90 per cent attendance at Beeston Primary School and recently gave a presentation to fellow pupils explaining that although he looks different, he still wants to play and try his best, just like them. ‘Although I wouldn’t wish what we have been through on anyone,’ says Gulzeab, ‘our family is better and stronger for having Marni in our lives.’
Winner: Inspirational Child 15-18 years, Olivia Windle
As a little girl, Olivia was a dancing queen who enjoyed regular ballet and tap classes and was incapable of sitting still when music was playing. Today, she still shimmies to Jessie J and Rihanna, but any steps she takes are tentative.
Olivia has juvenile Batten disease, a degenerative condition that has made her blind and is now robbing her of her ability to walk and talk. ‘We live in the moment because we never know what next week is going to bring,’ says her mother Michelle. ‘But Olivia’s smiles and determination make us so proud to call her our daughter.’
Batten disease is a rare and devastating neurological disorder caused by a mutated gene. Children are born healthy before developing symptoms and there is no cure.
For Michelle, 42, and her husband Russell, a 43-year-old RAF aircraft engineer, the first signs that Olivia was unwell were barely perceptible. ‘She had a lazy eye and needed glasses from the age of three, but it wasn’t until she started school that her vision really deteriorated,’ recalls Michelle.
Around the age of seven, tests found that the signals between Olivia’s eyes and brain were not working. Further blood tests confirmed Batten disease. ‘The consultant gave us a leaflet and said we’d need time to take it in,’ says Michelle. ‘And when I started reading about it, it seemed unbelievable that all these things were going to happen to our beautiful, vivacious girl.’
Although distraught, the Windles resolved to be positive. They went on holiday to Florida and, back home in Sheffield, ensured that Olivia remained active through school, dancing lessons and her weekly youth group. ‘We realised we could play a waiting game, or we could do our best to build memories. And I’m glad we had all those good times, because Olivia still talks about them,’ Michelle says.
Olivia’s diagnosis had wider implications for the family. If two parents are carriers, as Michelle and Russell have since discovered they are, their children have a one-in-four chance of being affected. There was a risk that Olivia’s brother Harrison, then aged three, also had the disease, ‘but we decided against testing him,’ says Michelle, ‘partly through fear and partly through being aware that nothing we could do would change what was meant to be.’ Harrison is now 13 and well. The Windles have since had a third child, Findley, aged five, and tests during pregnancy showed that he was an unaffected carrier.
Before completely losing her sight at the age of 11, Olivia, a diehard Harry Potter fan, learned to read using the Moon touch system, an alternative to Braille, and practised walking with a cane. ‘We were able to prepare her while keeping life as normal as possible,’ says Michelle. Today, at the age of 17, Olivia faces new challenges. Her mobility and speech are declining and she needs medication to control seizures. Yet she attends her special school and still goes to freestyle dance classes at the club she first joined aged five.
‘Every morning, she has to put such effort into starting her day, but she never says, “Why me?” She’s an inspiration and that is why we nominated her for a WellChild Award,’ says Michelle. ‘Attending the ceremony and meeting Prince Harry has given her a huge boost. He made her feel special and it was a chance for us to tell Olivia just how amazing she is, too.’
How to nominate
National children’s charity WellChild is calling for nominations for the 2018 WellChild Awards, sponsored by global healthcare company GSK.
We want to hear about children and young people who live each day courageously despite serious illness, or an amazing brother, sister, nurse, doctor or other professional who goes the extra mile to make the lives of these children as happy and fulfilled as possible.
To nominate them go to wellchild.org.uk/awards or call 01242 530007 to request a nomination form. The closing date for entries is 9 April 2018 at 11.59pm. Awards will be handed out at a glamorous event in London this autumn. To make a donation, support WellChild or learn about its work, visit wellchild.org.uk.
Categories for nominations are:
- Inspirational Child or Young Person between the ages of four and 18 who deserves to be celebrated for their courage in coping with or overcoming serious illness.
- Most Caring Child or Young Person between the ages of four and 18 who devotes their time and energy to caring for a friend or sibling who is sick.
- Inspirational Nurse/Doctor who goes the extra mile for the children in their care.
- Health Team Doctors, nurses or other healthcare professionals who work together to make a huge difference to the lives of seriously ill children.
- Outstanding Professional A professional who has worked above and beyond for children in their care.