My bionic boy
Cheryl Vincent, 39, from Bedfordshire, watched her son lose all four limbs. Now, he’s her hero…
Cradling my newborn baby girl, I rocked her from side to side.
‘Five days old today,’ I smiled. It was April 2016, and my partner of six years, Luke, 30, and I had just welcomed Layla into the world.
Whilst I was enjoying being in a baby bubble, I was also worried about my son Kye, then eight.
Kye was usually a bubbly, happy boy who loved watching Spongebob Squarepants and Star Wars on repeat.
We were so close and he was excited to be a big brother.
Only, straight after Layla had been born, Kye fell ill.
‘I think he’s got a tummy bug,’ I said to my mum Veronica, 53.
‘I’m concerned that it could be meningitis,’ she replied.
‘No, it can’t be!’ I said,
I watched his limbs turn black and blue
considering his symptoms.
Kye was poorly, but it didn’t seem sinister or serious.
‘Look at photos online, and make sure you keep an eye on him!’ she warned.
I searched up meningitis on the internet, and scanned through the photos.
Then the following morning, I went into Kye’s room to check on him.
Straight away, I spotted the bruises on his knee, shoulders and hips.
They were a fluorescent purple.
‘It’s going to be okay,’ I said, as Kye dripped with sweat and vomited.
Instantly, I knew Mum was right – it was meningitis.
I recognised the bruises from the photos online.
By the time I’d called 999, the bruises were spreading into large rashes.
He looked battered.
‘There will be a big team waiting when you arrive at hospital,’ the caller warned.
Kissing my sixday-old daughter goodbye, we gave her to our neighbour to look after.
My heart raced with fear in the ambulance on the way to
Luton
Hospital.
I stood to one side when we arrived, as a herd of 15 doctors and nurses surrounded
Kye with cannulas and needles.
I could hear Kye screaming in agony as they wheeled him to PICU.
Within hours, medics had diagnosed him with meningitis and placed him into an induced coma.
I was overwhelmed with panic and worry.
‘We need to transfer him to St Mary’s Hospital in London,’ they said.
It was all a blur.
By 5pm, I was sat on Kye’s bedside in a specialist infectious disease unit at St Mary’s Hospital. Hospital
I was an absolute mess. Luke’s parents had Layla so that we could stay with Kye. He needed me more now.
‘Kye is in a very critical state,’ the doctor explained.
‘We are only giving him four days to live.’
Watching his limbs start to turn purple, I broke down in tears.
‘I’m so scared of losing him,’ I sobbed.
For two weeks, he lay in intensive care unconscious.
‘I love you,’ I whispered to Kye at every opportunity.
His feet started to turn burgundy and then black.
I knew that they would have to be amputated.
When Kye was moved to critical care, I was able to have Layla with me.
For four weeks, I watched Kye lose his appetite, throw up and struggle to move.
The dead tissue in his limbs made him so ill.
Clutching his little sister, she helped me keep it together.
Then doctors broke the news to me: ‘We’re going to have to take his legs.’
‘Don’t tell him yet,’ I pleaded. Sitting with a child psychologist, we talked through the best way to tell Kye the news.
And the following day, I sat on Kye’s bed and cuddled him.
‘You’re going to lose your legs,’ I told him gently.
‘Don’t you dare take my legs!’ Kye burst out.
‘Leave my legs alone,’ he
sobbed, sobbed as I held him down tightly. tightly
Just two days later, he was wheeled away for his big operation.
And when he came back legless, I was in shock.
Thankfully, the moment he came around, I was overcome with relief.
‘Mum look at me!’ he beamed.‘i’m loads better. I’m so hungry.’
Without the dead tissue in his legs, Kye had perked up.
‘Can I have a Mcdonald’s?’ he pleaded. ‘You sure can!’ I smiled. It felt like I had my boy back – legs or no legs.
‘I want to be the bionic boy,’ Kye told me.
He was watching a girl on Youtube called Tilly with a bionic arm.
At this point, we knew he’d lose his left hand.
‘I want one just like hers,’ he said.
The following week, he had an operation to remove four fingers on his right hand, and they stitched his hand to his side.
And the week after, he had his left hand amputated, too.
That was when it really hit home.
Looking at him bandaged up at every angle, I couldn’t help but cry.
Kye looked helpless. Thankfully, he couldn’t feel the pain of the operations – only the skin graft.
After six months in St Mary’s Hospital, Kye was transferred to Stoke Mandeville Hospital for physio and rehab.
It was progress. There, they taught him how to use prosthetics and get his body strength back. Watching Kye take his first steps with prosthetic legs, I burst out in tears.
‘I am so proud of you!’ I said. ‘Look at your big brother walking,’ I smiled to Layla. She helped keep us all motivated. In September, Kye visited his school and showed his friends his new prosthetics. He walked in with his head held high. After 26 weeks, we took Kye home, just in time for Christmas. We adapted to using a wheelchair and prosthetics daily. Meningitis Now, Meningitis Research and Meningitis Help have all been a brilliant support for us.
We were able to meet families just like us. In November 2018, Kye started going back to school for mornings, and soon he’d joined in with P.E.
‘I’ve got a girlfriend,’ Kye told me one afternoon. ‘Do you now?’ I chuckled. Kye has overcome every single hurdle that’s been thrown at him.
He even taught himself to backflip on our trampoline. A year after Kye’s amputations, we began fundraising money to get him a bionic arm.
Thanks to generous donations, we raised £15,000. We travelled to
Devon to meet with orthopaedics who helped build a socket in Kye’s left arm.
He then had a Hero Arm mechanical prosthetic fitted by Open Bionics.
Watching him wave his new arm around was emotional.
‘It’s so cool!’ Luke and I agreed.
We were both so impressed! And best of all, it was Star
Wars themed!
White and black with blue details and markings.
‘You are the first person in the world to receive a bionic arm with an R2-D2 design,’ they said.
‘Just like Luke Skywalker,’ Kye said, in awe.
Kye’s new arm has transformed his life and helped him do everyday things that we all take for granted.
He can write, cut food and hold a cup.
He’s finally got some independence back.
Bionic legs haven’t been created yet, but when they do – we want a pair!
Since Kye left St Mary’s, he’s had three big operations all related to his meningitis.
We are in hospital often, and he’s on medication to stop phantom pain.
Sometimes, Kye can feel his old limbs.
‘I’ve got pins and needles in my foot,’ Kye laughs.
Kye wants to be a gamer when he’s older, and I know that he’s got such a bright future ahead of him.
My 12-year-old is a quadruple amputee, and he still has the biggest smile on his face every single day. After everything we’ve been through, I couldn’t be any prouder of my brave
bionic boy.