Adam’s son Luke was 7-years-old when he contracted meningococcal meningitis and septicaemia in 2019, leading to multiple amputations. Now 12, Luke is a positive force who fundraises tirelessly for charities that have helped him.
Luke’s dad, Adam, from Embsay, in North Yorkshire, tells us the story here.
“Luke contracted meningococcal meningitis septicaemia in December 2019. After a day of being unwell at home we rang 111, an ambulance was sent and they arrived, did some tests and decided to take him to hospital
“Upon arrival at Airedale Hospital they suspected it was meningitis. After some tests they confirmed this and found us a bed at Sheffield Children's Hospital. An Embrace ambulance arrived (basically a mobile ICU unit) and they told us that they were going to put Luke into an induced coma.
"We gave him a kiss and a cuddle, not knowing whether he would make it as his skin was becoming more blotchy and he was hooked up to lots of drugs.
Now a waiting game
“Upon arrival at Sheffield we went straight to ICU where they confirmed the diagnosis. It was now a waiting game to see if the drugs and Luke could fight off the meningococcal meningitis septicaemia.
“His hands and lower legs turned black due to the lack of blood flow. The doctors and nurses were struggling to keep his body temperature under control with the cooling mats, his internal organs were also under attack not just from the sepsis but also the drugs that were intended to save him.
“Luke was placed on a dialysis machine to help him lower his blood temperature. For seven days Luke fought for his life. He eventually turned a small corner and the meningitis was receding. Luke was brought out of his induced coma, but was still on a lot of drugs for the pain.
‘Goodbye my beautiful hands, you served me well.’
“We now had to wait to see if the sepsis would retreat and if his limbs would return to a normal colour. Unfortunately for Luke this didn't happen and just after Christmas 2019 we had to have a discussion about amputations. This didn't go down well. Luke, however, realised his hands were no longer functional and surgery was planned.
"Just as he went into surgery he said ‘Goodbye my beautiful hands, you served me well.’ Not long after his arm amputations his lower legs also had to be amputated.
“Luke then spent the next ten weeks having 23 surgeries to take skin grafts and cover his open wounds on his legs and arms.
“After all these surgeries Luke had to learn nearly everything again, from eating and walking to sitting up. This involved lots of physio and occupational therapy. Luke battled through and slowly our little boy was returning. As Luke was getting stronger we were moved to the burns unit, as due to Luke’s many and fragile skin grafts this was the best place for his ongoing care.
Covid raised its ugly head
“As Luke was progressing through this care, Covid raised its ugly head and on a day I had returned home to take delivery of some medical equipment, Sheffield Children's was put into lockdown.
"Luke and his mum were trapped in hospital, most other patients had been sent home and nursing staff were relocated to deal with an unprecedented pandemic. This meant that Luke's mum had to be nurse, physio, therapist and pretty much everything else! This was extremely difficult for both of them and the rest of the family as we were stuck at home and unable to visit or help.
“Eventually Luke was discharged just short of six months since being admitted. He was now a quad amputee, left arm mid forearm, right just past his elbow and both legs through his knee joints.
"It was such a relief to get Luke home, but also still difficult as we all had so much to get to grips with and as lockdown was still in place we couldn't get any home visits to help us.
“Luckily for us Luke is a fighter and he went from strength to strength. When the schools were allowed back he headed back to his primary school with all his friends.
Raising funds for prosthetics and charities
“Since then Luke has amazed us with everything he does. He raises funds not only for his own prosthetics but for other charities that have helped him. He has climbed both Embsay crag and Pen-Y-Ghent to raise funds.
“Meningitis still affects everything we do. Trips have to be planned and routes found well in advance. Everything ends up costing more. For example, if we go to London nearly all tube stations are not wheelchair friendly, so we either have to walk, attempt to catch a bus or get a cab.
“For Luke we are still not sure if the meningitis has affected how his bones will grow and there is always the possibility of other medical issues. Luckily for us Luke was not affected mentally and is a very bright young man. However, his physical barriers are huge."
Luke's family was supported by our nurse-led Helpline. If you need support please call 0808 80 10 388 or email helpline@meningitisnow.org.
