Whilst we were in ICU Luke’s condition was confirmed, Meningococcal Meningitis Septicaemia (type Y) which normally only affects adults. It is Meningitis with the added complication of sepsis. By this time, Luke was also on a dialysis machine to keep his liver and kidneys functioning and to try and cool his blood to try to get his body temperature under control. Slowly the drugs started to work and fight the disease, he came of his ventilator after 4 days which felt like a massive step. However, we were still waiting for what the doctor’s term demarcation, which was basically to see what areas of skin and limbs had not survived and what if any may return.
Around this time, we were moved out of ICU and onto the High Dependency Unit. To start with our time here was mainly a waiting game for the demarcation to finish.
Unfortunately for Luke, the demarcation did not change or improve, all 4 of his limbs were completely affected, and it wasn’t too long before a conversation had to be had about him losing his hands. As you can imagine not a good day. To start with Luke did not take this news well but over the following days and lots of conversations he came around the fact that his hands were no longer functional and Luke being Luke just as he was going into surgery said......
‘Thank you, my wonderful Hands, you served me well’
After his hand amputations we were still hopeful for his legs, his left foot even started to return to a normal colour. But it wasn’t to be and soon we were having another conversation about him losing his right foot and leg to just below the knee and then after this his left leg and foot as well. As this leg was in a worse condition, the surgeons said they would have to amputate it through the knee joint. To enable Luke to get around without any prosthetic limbs on we had to make the decision of shortening his right leg to match.
After the removal of limbs Luke has undertaken many more surgeries to cover what had survived with a covering of skin. 50% of his body had no skin and so the remaining 50% has had to be donor. To get him healed and to minimise infection he has been going to theatre Monday, Wednesday and Friday, to have skin grafts and dressing changes. In between these surgeries there was physio, psychology, occupational therapy and lots and lots of doctors and consultants prodding poking and checking. Luke had 23 surgeries over a 10-week period.
When Luke’s surgeries had finished, we had the difficult task of Luke learning to cope without his lower legs and arms, we had the difficulty of this too along with learning how to best look after Luke’s skin, another steep and difficult learning curve. Luke seemed to take it all in his now slightly smaller stride!! He had his moments but for most of the time he just got stuck into whatever task he needed from tentatively trying to balance, learning to use cutlery, exercising to strengthen his core he mastered it all with a smile. Our little boy was returning. As Luke’s recovery progressed, we were moved out of ICU / HDU and went to ward 2, on ward 2 is a speciality burns unit, however due to the number and fragility of Luke’s skin grafts this was the best place for his ongoing care.
All the staff at Sheffield Children’s hospital were superb the care Luke received was second to none. Whilst on ward 2 this care helped Luke to gain in strength and confidence to overcome more and more obstacles. Unfortunately just as Luke was making progress covid hit…..
At this point the resources in the hospital started to shift to deal with this unprecedented pandemic. For us it was even harder as I had returned home to take delivery of some medical equipment for Luke’s eventual discharge, the hospital went into lockdown meaning I could not return. Leaving Christine in the hospital to look after Luke.
Due to covid the number of staff on the ward, the physio’s etc etc plummeted dramatically, any patient’s that could be discharged were the whole ward turned into a ghost ship. Christine became Luke’s sole carer! The staff were not allowed into the room and Christine and Luke were not allowed out. This was an extremely tough time for Christine. The reason Luke was not discharged is because he had an open wound on his right arm that was not closing, the surgeons were contemplating further surgery to shorten his arm. Our prosthetics consultant wanted to keep as much length as possible as this would help Luke later in life to have better functioning prosthetic arms. Whilst we waited for this to heal Luke got an infection in one of his lines that they were using to administer medicines. This occurred on Christine’s 40th birthday so along with being alone in hospital, Luke was also back to being quite ill. In the end the line was removed, and Luke had to take all his medicines orally. Some of these medicines were not nice and generally we had to bribe Luke to take them with either chocolate or strawberry yoghurt.
As Christine and Luke were in hospital, I was sat at home feeling like a spare part there was nothing I could do to help. As I had thought that I would be returning to hospital we had decided that it would be best not to tell Harry I had come home. Another tough decision but Harry had spent the last three months being looked after by both sets of grandparents. We thought it would be better for Harry to stay in this during this routine rather than interrupt it. Just as I thought it would be great for Harry to return to the family home I fell ill. I contacted our GP and after a phone consultation she was convinced I was showing several symptoms of covid. Meaning that although Harry was just at the other side of Skipton, I had to isolate for twenty-one days. We did tell Harry I was back and that I had covid. He was initially upset but understood he needed to stay where he was in order for him and the family to stay safe.
I did my quarantine and was eventually able to pick Harry up and bring him back to the family home. Meanwhile Christine and Luke were still residing in Sheffield Children’s. This was really taking its toll on Christine both physically and mentally. Harry and I found it tough not being able to visit and it was mentally difficult trying to keep some sort of family going whilst being physically separated and not being able to help.
Luckily for Luke and us, his arm started to heal the hospital started and 19 weeks and a day after being admitted on the 24th of April 2020 Luke was discharged!
A relief in some ways as we could be a family again, however it came with a lot of worry and uncertainty as we would be leaving what was a safe place with experts around to help should the need arise. At this point the whole country was in lockdown amid the uncertainty of the covid pandemic. This was a bit of a double-edged sword for us, on the one hand resources were squeezed as services were either cut or running with fewer staff meaning we had less support, which was not ideal for us. However, it did mean that although we were isolating, we had time together and didn’t have to worry about people wanting to visit us! It gave us the time to return to being a family.
Over the coming months we had started to sort many things out for Luke, however it became apparent that our house did not adapt well to Luke’s needs. We made the heart-breaking decision to sell the house that we had spent the last 8 years extending and improving. The difficult thing was it was not finished, so with the help of various trades, plastering, joinery, landscaping, decorating and carpeting was carried out. The house went on the market and sold.
We found and moved into a bungalow which is more suitable for Luke’s needs. To achieve this move and as we are yet uncertain as to whether Christine and I could return to full time work, a lot of the money raised went to on the purchase of this house to enable us to be mortgage free. Securing the house for Luke’s future.
Whilst all this was going on Luke went from strength to strength and in the three years since leaving hospital has amazed the Doctors and us with everything, he has achieved from learning to walk, pick up utensils, feed himself, and return to school!!
We still have many appointments back in Sheffield both at Sheffield Children’s and Sheffield Northern for check-ups and prosthetics.
We have been lucky that Luke has received some prosthetic arms from both Koalaa mit, and the charity Remap, these are slowly helping him to be more involved both at school and at home.
Luke also has his new Trekinetic wheelchair. This is an all-terrain chair that suits his needs. We had to battle the local authority to get his NHS funding put towards the cost of this chair, with help from Dr K Thomas at Fisher medical Practice we eventually secured the grant, although the grant barely covered a quarter of the cost of the chair, we felt it was the right chair for him. This was another long six month wait, the chair has enabled Luke to have more independence, especially at school where he can now play with his friends without the need of an adult stood right behind him cramping his style!!
However, Luke’s story is nowhere near the end, the professionals still say we are still just past the start. Luke’s grafts will take at least another 6 -24 months to properly heal and start to toughen up, we will be under the teams at Sheffield until Luke reaches the age of 21. This is the time that boys stop growing.
In Luke’s words ‘falling ill at aged seven rebooted my life, having to learn everything again from walking to eating, I have to find new ways to do everything, sometimes it’s really hard, but I just do my best’.
Luke has continued his journey of recovery and along the way has been helped by quite a few charitable organisations. Luke and the family have always been massively grateful for their support, be it over the phone or in person. Luke decided that he wanted to give back to those that have helped him and other families, so he decided to walk up Embsay Crag, a hill that he sees every time he returns to his village home. Embsay crag was Luke’s Everest standing at 1,204 feet tall, this would not be an easy climb for a quad amputee. Luke took on the challenge in November 2023 and walked up and down the crag in just over two hours raising twenty-six thousand pounds for his first two nominated charities! Watch his video on ITV.com
As parents we are extremely proud of Luke, it is very difficult at times having to find new and different ways of going about everyday tasks. It sometimes takes a long time to find a way to achieve what his peers take for granted. This has changed every aspect of our lives, there are times when we struggle, times when we are blown away by the help and generosity of the people around us. We are massively grateful to all to all those that help and support Luke.