Brave seven year old who lost his arms and legs to meningitis takes on new challenge

Rugby-mad youngster Luke Mortimer is learning to adapt to his new normal.

The seven-year-old from Skipton was struck by a very rare strain of potentially fatal meningitis normally only found in adults in December last year. As a result, doctors had to amputate Luke’s arms below the elbow and both legs below the knee. Before being eventually able to go home five months later, Luke underwent 23 operations as clinicians worked to save his life and carry out multiple skin grafts.

News of his illness led to a massive swell of support from Skipton and the local rugby community and beyond and a fund-raising drive has raised £130,000. Support has come from as far afield as Canada and Australia from rugby fans moved by Luke’s story.

After five months in hospital – first Airedale and then Sheffield Children’s – Luke is now back home with his mum and dad Christine and Adam and big brother Harry, 11. He is starting the lengthy rehabilitation process which includes daily physiotherapy and learning to use prosthetic limbs, all which have been delayed due to the current coronavirus pandemic.

But throughout he still smiles.

Luke showed none of the traditional signs of meningitis when he complained of feeling unwell on December 13.

“There were so many bugs going round at the time that we thought it was just one of those,” says Christine. But as Luke continued to be unwell during the day she became increasingly worried.

“I think as a parent you have a sixth sense and you must listen to it whether or not they are displaying the signs”

After they dialled 111, Luke was rushed to Airedale Hospital before the specialist EMBRACE team transferred him to Sheffield Children’s Hospital where he was kept in intensive care on a ventilator for a week fighting for his life. Harry had to stay with grandparents while Adam and Christine stayed at the Sick Children’s Trust funded Treetops home from home.

Once Luke was moved to the high dependency unit, they started to believe he would survive. But the meningitis had wreaked havoc with doctors having to amputate all four limbs to save his life.

“It was devastating and we had to have some very difficult conversations with Luke but it was important to us that he knew what was happening to him,” says Adam. “It was also very difficult for Harry as he was away from both of us and Luke.”

And then lockdown happened, making an already difficult situation worse. “Things changed overnight,” says Christine. “Luke is a very sociable little boy and before lockdown people were always popping in to see him from all over the hospital. But suddenly overnight that stopped. It was a very tough time, but Luke is such a resilient boy.”

Even Adam, who had gone home to start some adaptations to their home ready for Luke’s return, was unable to go back into the hospital.

“It was a very difficult five weeks for all of us,” says Adam.

During this time Luke was helped by the hospital’s school.

“We didn’t know there was a school in Sheffield Children’s until we stayed on the ward,” says Christine. “Luke loves school and really missed it even while undergoing treatment. We balanced it around how he was feeling. Luke took his learning at his own speed and the teachers were flexible and really understanding.

“It’s also gave Luke some structure to his days and something to look forward to.”

The hospital’s in-house school offers one-to-one lessons for patients and brings the normality of learning back into children’s lives during treatment.

The aim of the Becton School Hospital Teaching team is to engage children in learning and bridge the gap between hospital and school, to ensure they haven’t fallen behind their peers.

And even after lockdown Luke’s teacher Caroline Hague worked remotely with him,

“Like all other schools, we had to think out of the box and work out how we could support children who were still in hospital during this time.”

Last year, The Children’s Hospital Charity and Lloyds Banking Group helped fund new laptops and tablets which has allowed them to continue supporting children in the hospital during this time of social distancing.

“Without the technology provided by The Children’s Hospital Charity, continuing Luke’s lessons would have been impossible,” says Christine. “It’s been a massive boost and we’ve been able to continue his learning as normal. It’s a huge weight lifted to know that, amongst this life-changing experience, with his education he can be like everyone else.”

Luke even designed his own maths-based Star Wars game which he still loves to play even now he is home in Skipton,

“He likes a challenge and likes to challenge other people, he also likes to win – like any other seven-year-old, I suppose,” says his mum.

“It has been a steep learning curve as due to Covid he came home and stayed home earlier than he would have done as they obviously don’t want him going in and out of hospital all the time,” says Adam. “He does have moments and gets a bit frustrated, he is missing his friends and school – but so are many children,” adds Christine.

“But 99.9 per cent of the time he is very resilient. We take our lead from him. I think as an adult you worry about ten years down the line but Luke is thinking about today and tomorrow and what he is able to do. And that’s how we do things. We say if he can’t do things the way he used to be able to then let’s find a different way of doing things.”

A crowdfunding appeal to raise money for the Mortimer family has hit nearly £130,000. Set up by Skipton Rugby Club member John Firth he now hopes to raise £150,000. Adam is a coach at Skipton Rugby club where Luke also used to play. His story touched the rugby world including even the rugby community as far afield as Canada and Australia.

www.justgiving.com/crowdfunding/john-firth

Sheffield Children’s Hoapital is supported by The Children’s Hospital charity. If you would like to make a donation to the charity’s Covid-19 Appeal, visit www.tchc.org.uk, call 0114 321 2470 or text SHEFFCHILDRENS to 70085 to donate £5. This 
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