Kobi's Story - Noahs Ark Children's Hospital Charity

Kobi’s Story

As told by his mum, Kizzy.

I was at my parents’, planning the final preparations for our annual family camping holiday to Cornwall,  when I got the call.  Kobi, my eight-year-old son, had been hit by a van in our village.  We were told to come – quick! I knew it would take us a while to get there so my first thought, after the sheer panic, was to ring my brother who works in the same village.  I needed to know that Kobi had someone he knew with him to hold his hand. The thought of him being in pain, frightened and alone was too much to bear.

When we got to the scene, Kobi was lying on the floor, convulsing. The police, paramedics and an ambulance were already there and shortly after, an air ambulance arrived with a paediatric doctor. Kobi was put to sleep to stop the convulsion that was showing no sign of stopping and taken to A and E.  When we got there, we were ushered into a side room with a police officer to wait, with no idea if our son was alive. I felt numb. Our life as we’d known it had changed forever.

Finally, the doctors came in to see us.  Kobi’s head had hit the van full force and he’d suffered a catastrophic brain injury called defuse axonal injury (DAI). We were told that 90% of patients with severe DAI never regain consciousness and that so far, Kobi was showing no sign of brain activity.  It was possible that he was already brain stem dead. 

We were taken to PCCU, where we thought we were going to say our goodbyes. Kobi was lying there with tubes in his moth and nose and attached to more wires and machines than we could count.  The next day, the neurosurgeons took us into a side room and showed us a scan of Kobi’s brain.  There was no white like you’d expect to see, just black. They said they had no idea how Kobi had even survived the crash and, as gently as possible, they tried to prepare us for the likelihood that Kobi would not survive. But where there was life, there was hope and like any mother, there was no way I was giving up.

Over the following ten days, Kobi was very slowly weaned off the sedatives in the hope that he’d show signs of brain activity. All we did was sit by his bed, desperately hoping and praying for any sign of life. We took anything we could get.  A slight movement of his chest during tube changes was a sign to us that he was trying to breathe for himself.  I kept asking over and over if I’d at least be able to take him home. I knew I’d never cope with losing him but we’d find a way of dealing with anything else.  But no-one could give us that reassurance.  

Over that time, we watched other parents come and go – all with fear and worry etched into their faces. You’ll keep going for as long as you need to as a parent but the trauma of having a very sick child is too hard to even describe.

Gradually, Kobi’s body started showing real signs of independent activity and by the 12th morning, he was off the sedatives and breathing on his own. He continued to lay, with his eyes open, but otherwise still for many more days. Then slowly, one day, he started to move his limbs. I knew then that our determined, willful boy was in there and he was going to defy the odds.  He may never recover fully, but he’s here and we will go home.  Maybe not in time for Christmas, but eventually.

I’m a carer by profession and I’ve always regarded myself as a strong person. I thought that all I needed to be ok was for Kobi to be ok. So the feelings of deep loneliness took me by surprise at first. Our friends and family were great but ultimately, people had their own lives to lead, while our life had changed forever. I realised that, in order to survive, both my husband and I had deeply buried the trauma of almost losing our son. I’m worried that we’ve bottled it all up until we get home and that it’s then that we’ll break. But we can’t ever break because Kobi will always need us now.

What we needed from the beginning was someone to talk to. Someone separates from the medical teams in those moments of crisis to help us process things, instead of bottling it all up and feeling isolated and separate from the rest of the world.  It’s what so many hospital families need – someone who is there to provide that emotional support so we can be strong for our children.  It’s so much to take in without help. 

I’ll be eternally grateful to the medics who saved our son but now he’s out of immediate danger, Kobi desperately needs his emotional health looked after too. His life has gone from school and football to hours of sometimes painful and frustrating procedures.  He hasn’t been home since August, he missed his big sister Ellie-May and the things he still can’t do.  He needs the opportunity to switch off from hospital and express any feelings he wants to. 

Thanks to people like you, who donated to the Here for You Appeal in 2022, Kobi now has a music therapist who comes to visit him every week. It’s the highlight to his week and it has this magical ability to completely alter his mood. There’s also a new ward counsellor, again funded through the Here for You Appeal, who will help families like ours to work through our traumatic experiences.  But the hospital is a big place and there are so many families in need of support. The Noah’s Ark Charity wants to make sure that everyone gets the help they need by funding a second ward counsellor and more therapies to help children cope with difficult situations, disability and trauma.  And that’s where they need your help.     


Thank you