A group of Cumbrian children have been celebrated for their bravery in the face of severe illness.
The Braveheart awards, held twice a year, celebrate the courage of children aged five to 16 from across the North East and Cumbria, who have been diagnosed with life-changing illnesses and conditions.
Founded in 1989, the Brave Hearts of the North East charity has awarded over 750 youngsters across its 35 years of running.
The charity was inspired by 11-year-old Joanne Gillespie, who endured two major operations and fought back against a recurring brain tumour and was awarded a National Children of Courage Award.
Joanne wrote a book called Brave Heart to inspire other youngsters and families of sick children to keep fighting – which sparked the inspiration for the charity to be set up, as a way of recognising and rewarding other children with similar stories.
Three Cumbrian children were given awards at the latest awards ceremony in November, which was held at St James’ Park in Newcastle.
The children included:
- Thea Lowery, aged five, from Carlisle
- Riley Thompson, aged nine, from Aspatria
- Eli Mabophiwa, aged 10, from Workington
Each child won a special award and a prize of their choice at the ceremony and were presented their awards by newsreader Carol Malia and Paralympian Josef Craig.
The youngsters also got the chance to enjoy the ceremony as a special day out and meet the likes of players from the Newcastle United Women’s Football Club alongside characters like Spiderman and Elsa from Frozen as well as enjoying a stadium tour.
Aspatria’s Riley received his Braveheart award after facing coarctation of the aorta as well as fighting necrotising enterocolitis. He has also endured open-heart surgery and an epilepsy diagnosis.
The youngster attended the celebration with his mum, dad and brothers and was nominated for the award by his dad, John.
John said: “I nominated him for the Braveheart award because he’s gone through so much, but bless him, he’s always got a smile on his face, he’s just a little miracle.
“We do a little charity work for Children’s Heart Unit Fund because they helped us massively when we were over there.
“But it was a lady from there who got in touch and said have you thought about nominating Riley for this, and I didn’t even know it existed.
“So I nominated him, and totally forgot about it. We then got a phone call from a number we didn’t recognise and they said they wanted to award Riley.”
John said it was an emotional day for the family and a special one for Riley.
He added: “It was a fantastic day, they got to meet players from the Newcastle Ladies Football team, met Spiderman and Elsa and all got amazing gifts, and Riley chose a brand new iPad.
“It was an emotional day for what he’d been through and he was very nervous going on stage, but he was so proud after and he went to school and told all his friends.
“It’s hard enough listening to other children’s experiences, but when they spoke about it all it’s like wow, it’s a lot on paper.
“It’s not just the one thing, it has been things consecutively impacting each other and that little boy is amazing.
“You could see the little beam on his face, he deserved it and it was a tear jerking moment.”
The nine-year-old’s health problems began at the start of his life in 2016, after he was born with coarctation of the aorta, a narrowing in a part of the aorta, the body’s main artery.
He then had to fight necrotising enterocolitis, caused by the coarctation, which causes tissues in the intestine to become inflamed and start to die.
John said: “When my wife Steph was pregnant with Riley she found out he had a coarctation of the aorta. We went for the various visits to the Royal Victoria Infirmary in Newcastle and Steph gave birth there and we then went to the Freeman Hospital in Newcastle.
“It was supposed to be a quick in and out, two week kind of thing. He’d get a little heart operation through his side and everything would be fine and he could go home.
“Unfortunately, Riley had other plans and he got necrotising enterocolitis. The bottom half of his body wasn’t getting enough blood because of the coarctation so his large intestine perforated.
“On day two he had an emergency operation and he had his large intestine removed and a stoma fitted, he’s since had that reversed, but on the third day, he had his coarctation repair, and unfortunately he came back on life support.
“He was on that for a good 10 days, and we were told at various times throughout those 10 days to say our goodbyes, because there wasn’t a kidney dialysis machine small enough for him.”
Riley went through several procedures to help him during this time and John said when doctors tried to take his ventilator off, they realised they could not, as they found a large hole in the top and bottom chamber of his heart.
He then went for open heart surgery just a month later and underwent a diaphram plication, as his diaphram was operating in the wrong way, and needed to be fixed.
John said Riley went on to develop necrotising enterocolitis again as well as a blood infection as a result of all the medical equipment he was attached to.
He added that it was a very tough few months for the family, but that they pulled together strongly and he praised his wife Steph, who expressed milk as often as possible to support Riley.
After spending months in hospital after his birth, Riley and his family were able to get home just before Christmas in 2016.
John said: “As far as heart stuff is concerned, they do say he is kind of fixed now, he does have some residual pulmonary stenosis due to the scar tissue from where they have operated previously.
“He has had a balloon dilation to make that wider and we do go for once a year check ups at the freeman.”
But in 2019, John got a phone call to say Riley had gone into cardiac arrest.
He added: “At the time we didn’t know what was happening, but that was his first epileptic seizure. So because of his heart not being absolutely perfect, his stats drop and he goes into respiratory arrest.
“So we’ve had to resusitate him at home two or three times. It seems to be when he gets a little excited or he overthinks something, that’s when it happens, so we’ve been in Christmas day twice and Christmas eve.
“But his epilepsy is under control now under two lots of medicine and he’s got a monitor that he puts on every single night to alert us if his stats drop, because again, he has the fits in his sleep.”
John said that despite it all, Marvel-mad Riley continues to be a star in both his family and friends lives.
He added: “He has always been afraid of hospitals but he always goes to his appointments with a smile on his face and after that initial nervousness of wondering what’s going on, he’ll give them a hug at the end.
“He’s a little ray of sunshine, despite what he’s been through he will come in and light up a room, he will make you laugh, he’s got a cheeky side as well.
“He’s aware he’s got scars all over his body, but he just like this is me. He tries his hardest at school and he takes everything in his stride.
“He’s got appointments coming up and his medication will change with his weight and are waiting for Royal Victory Infirmary to sort his teeth issues, everything is long winded with him and he knows, but he still has a little smile on his face.”
John added that through it all, support from others and having people reach out has made a huge difference.
He said: “We met friends while we were staying at the Freeman Hospital in housing provided by the Sick Children’s Trust and CHUF, we met a lot of friends in there that we’re still in touch with. It’s close bonds you make in unfortunate circumstances.
“But Sellafield as a company have been phenomenal with supporting us, they just get you and you’re not just a number.
“My team leader at time actually made the journey to Newcastle and took me and Steph out for dinner and I will never forget that, all it takes is that one person to make a difference.
“I don’t work in that department anymore, but I class him as one of my best mates. I’ll never forget what he did and it’s inspired me to do it with other people.
“But Riley’s school, Blennerhasset Primary School, have also been absolutely fantastic through everything, even for things like school trips they go above and beyond to include him, they’re just phenomenal.
“After the ceremony, he got an assembly the next day at school and he got to explain the Brave Heart book and what it was for, and then he took it back on the Monday to show the other teachers who missed it, he’s definitely spoiled!”
