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Kye's story

31st October 2016

Cheryl, from Leighton Buzzard in Bedfordshire, was celebrating the birth of her daughter when her young son Kye became ill in March this year. It was touch and go but the brave youngster has pulled through, despite severe after-effects, and has won the heart of the local community, being guest of honour at a new store opening in October. Cheryl recounts their story here

Kye's story

“Kye, our 8-year-old boy, contracted meningococcal septicaemia C on Mothers’ Day in March this year, just six days after his baby sister Layla was born.

“The previous night Kye started feeling unwell and had a high temperature, which Nurofen helped reduce, sickness and a headache. We assumed he had probably picked up a tummy bug. However, my mother was worried and before she left, ensured that I researched meningitis symptoms. Kye only ticked three. Looking via Google I saw pictures of bruising, which is associated with the rash.

“We called NHS direct and they weren't overly concerned. We were advised to regularly monitor his temperature and keep him cool by opening his bedroom window when putting him to bed. His temperature came down before he fell asleep.

“The next morning we woke up to Kye not being able to move out of bed and noticed he had four deep purple bruises on his shoulders, knee and hip. It dawned on me that this was exactly the same as the pictures I had seen the night before. I immediately called 999 and the ambulance crew arrived very quickly. A neighbour looked after my baby whilst the ambulance crew gave Kye his first antibiotic injection and then we rushed to A & E.

Bruises were appearing

“Upon arrival a large team was waiting for Kye. They pounced on him, installing drips, IV fluids, taking bloods, monitoring his SATS. Before our eyes the bruises were appearing everywhere on his poor little body. Within three hours Kye’s body looked as though he had been battered and he was screaming in agony.

“Later, Kye was diagnosed with meningococcal septicaemia and had to be sedated. The hospital arranged transport via the CATZ team to the specialist infectious diseases hospital at St Mary's in Paddington (London). I went with Kye in the ambulance whilst my partner stayed at the local hospital to get Layla checked over as she was high risk and fragile. Fortunately she was fine and they gave her antibiotics as a precaution.

“On arrival at St Mary's Kye was in critical condition. Meeting the consultant for the first time she confirmed that the first 90 hours were critical and that she was worried about Kye’s hands and feet. I couldn't have my baby with me during the critical stage and our lives went from high to drastically low within the blink of an eye. We were devastated, scared and emotional wrecks.

A waiting game

“On the first night we had to sign a consent form for the vascular surgeons to perform fasciotomies. This is where surgeons cut large incisions down Kye’s arms and legs to reduce the swelling and pressure and aid circulation. This was performed and we were informed it was now a waiting game. Kye passed the 90 hours and day by day his hands and feet were changing colour to black. This is because his body was centralising the blood flow to his torso to keep his vital organs functioning.

“In total Kye was in picu for 13 days in an induced coma and a further week once out of sedation. Originally we were informed he would be losing fingers and toes, then hands and feet, to hands and legs. In April, Kye had his first major operation, where his legs had to be removed, after weekly trips to theatre for dressing changes and debridement. He now has one through the knee and one below the knee amputation.

“Afterwards surgery took place on his right hand, where they removed the dead tissue. They then stitched his hand into his groin for a month and flapped skin over it. Kye was left with his lifesaving thumb and three very small stumps covered by tummy skin. Lastly the left hand was removed through the wrist.

Learning to walk on prosthetic limbs

“In total Kye spent six months in St Mary's Hospital before being transferred to Stoke Mandeville for rehab in terms of hand therapy and physio. Since leaving St Mary's Kye has been learning to walk using prosthetic limbs and is excelling.

“Kye has been attending Great Ormond Street, where they have been conducting tests and researching due to the fact that he was vaccinated as a baby against Men C but unfortunately didn't respond. Meningitis Now has supported us through funding travel expenses, as Kye has been in hospital for eight months and still has to make regular visits.

Kye helped to unveil the Co-op’s latest store in Leighton Buzzard. Store manager Neil Smith was moved and touched by the youngster’s battle against the disease and has pledged to raise funds for Kye’s family. He’s planning a parachute jump as part of his fundraising and in addition the store has also donated £1,000 towards our ongoing work as part of the launch day activity

March 2018

An update from mum, Cheryl:

"Kye's doing amazingly well and nothing holds him back. He's very determined to do things without my help. He likes to walk to and from school with his friends and likes to be independent! He also participates in P.E at school with his prosthetics. He doesn't like using his wheelchair unless his stumps are sore, but I couldn't be any prouder of him and how far he has come since battled meningococcal meningitis and septicaemia."