Inspirational Blake from Co Armagh to receive a special award from Prince Harry at the WellChild Awards

Blake McCaughey, has a very complex and incredibly rare genetic condition which means he has weakened muscles and can’t eat or drink - as far as his parents know, he is the only person in the world to have this combination of conditions which is so rare there is no single diagnosis, so no name for it.

Blake was picked from hundreds of nominations from across the UK to win the category of Inspirational Young Person in the awards run by WellChild, the national charity for seriously ill children.

The awards celebrate the resilience of children and young people living with serious illnesses or complex medical needs and honour the dedication of those individuals who go the extra mile to help them.

Blake has been in and out of hospital his whole life – before he was even two, he had been admitted to hospital 33 times and had battled pneumonia 19 times – and undergone hundreds of medical procedures including open heart surgery, the insertion of a feeding tube and an operation to separate his stomach from his liver.

He uses a wheelchair most of the time, receives nutrition through a feeding tube and recently spent seven months in hospital for operations and treatment to reduce some of his chronic pain.

Throughout he remained resilient and spread cheer to the hospital team with his infectious smile and fun antics. Blake decorated his room like a Christmas grotto and put on festive outfits, even dressing up as his doctor, Professor De Coppi, with scrubs and a painted-on beard to make everyone laugh and mark his birthday, which falls on Halloween.

Describing Blake as his hero, Professor De Coppi, who is a Consultant Paediatric Surgeon at Great Ormond Street Hospital, nominated Blake for a WellChild Award.

He said: “Blake’s smile and strength are a great source of joy to those around him. He fully deserves the recognition this WellChild Award brings because he is an incredibly resilient young man who thinks first of cheering up others, even in the hardest times.”

Blake’s mum Christine said: “We are absolutely overwhelmed and proud of Blake for everything he’s come through and his achievement in winning this award. When we told him he was so excited and it was all really emotional. For us as a family it is magical to be planning a trip to London for all of us that is for something wonderful like this and not another visit to hospital.”

Having lived in hospital in London or Belfast for most of the past four years, Blake loves it when he can spend time with his family and three dogs.

Prince Harry, The Duke of Sussex said: “For nearly 20 years, WellChild has been transforming the lives of children and young people across the UK, providing critical care that prioritizes the physical, mental and emotional wellbeing of these individuals and their families. The courage and strength embodied by these young people – and the tireless devotion of those who support them – never cease to inspire me. I’m honoured to attend this year’s awards ceremony and celebrate their incredible work.”

WellChild chief executive, Matt James said: “The number of children and young people in the UK living with long term, complex medical needs is growing.

"The WellChild Awards 2023, in association with GSK, will be a unique opportunity to recognise the immense challenges they have faced and to celebrate their remarkable positivity, resilience and spirit, which is an inspiration to us all.

"It will also help us to shine a light on the dedication of those around them, from siblings and parent carers, to the professionals who have gone above and beyond to give them the very best chance to thrive in life.”

Meanwhile, a fundraiser organised by the Belfast Giants is hoping to send Blake on a dream trip to the US.

The fundraiser was set up by A View From The Bridge - the Belfast Giants’ podcast.

The Odyssey Trust has already committed to donating £1,000 and the plan is for the teenager to go to Boston.

Giants head coach Adam Keefe has asked for supporters to head to the GoFundMe page.

He said: “For many years, Blake has embodied what it means to be a Giants fan. There’s absolutely no doubt that it’s been an incredibly tough few years for Blake, and his family, and we want to show our support and appreciation through this fundraising initiative.

“Blake is a remarkable young man, and I would urge all ice hockey supporters, Giants fan or not, to help us raise as much money as possible to get Blake to Boston.”

So far, almost half of the £10,000 target has been raised.

In a post on the GoFundMe page, it said: “We want to send a very special boy on the trip of a lifetime and we need your help to do it.

" Our special little friend is Blake McCaughey and it’s very fair to say that none of us would want to go through what Blake and his family have had to deal with since birth.

“The funds will be used to pay for flights, accommodation and day trips that can help to make memories for a family who just do not know what the future holds for Blake.”

To donate, visit www.gofundme.com/f/blakes-boston