A couple has described how their son has “defied doctors” after surviving a two-hour seizure but been left unable to walk or talk.
Katherine and Nick Slessor-Pavely from Tunbridge Wells were living every parent’s worst nightmare when they were told to say goodbye to 18-month-old Kit.
Kit had been a happy, healthy little boy who was reaching all his development milestones. But he began to have seizures and “out of the blue” in 2021 he suffered a devastating two-hour seizure.
This caused swelling of his brain and he was placed in a coma for three weeks.
He was initially taken to their local hospital, Pembury, before he was transferred to Evelina Children’s Hospital in London.
His mum said: “They told us he was going to have a stroke that day and we could let him go or we could try for an experimental operation so we decided to do that and he was rushed to King’s [College Hospital].
“At various points we were told he wasn’t going to make it. We phoned the family, we set up an organ donation, and we were planning his funeral.”
But, Kit rallied and beat all the odds.
Nick said: “They turned the machines off and he was able to breathe on his own which was amazing.”
They were told Kit would be in a vegetative state, but after being moved to the high-dependency unit and then a ward, his parents started to notice small improvements. After three months in hospital, their “brave boy” was able to come home.
But Kit has been left with epilepsy, motor-dysfunction, partial blindness and life-changing brain damage.
He cannot walk a few steps without a frame, grab things or speak, but he can communicate by smiling or laughing.
Since his return home, the now four-year-old and both his parents have had their genomes mapped out but nothing can be pinpointed to the exact cause.
His dad, who is a nurse at Demelza hospice said: “The only thing they found in his lumbar puncture at the time was the common cold.
“Before, he was a normal 18-month-old child who put plates in the dishwasher saying ‘dog, cat, car’ you name it, and was walking around.”
Katherine said: “Now, every single thing he needs we have to fight for.”
The family are desperately hoping to raise £135,000 to make adaptations to their home.
The quoted figure will allow them to knock down their garage and replace it with a bedroom, bathroom and new entrance to the house for Kit.
But raising the funds has come with challenges.
Katherine said: “As we both have careers, and a mortgage, we qualify for almost no support despite the huge costs involved in giving him a normal happy life, particularly therapies, vehicles and neurological support only offered privately.
“We also don’t qualify as carers, as we earn ‘too much’ and therefore receive no carers allowance.”
So far, they have raised almost £33,000, with more than half of this given by a mystery donor.
If you would like to donate to Katherine and Nick’s fundraiser click here.
The family has been given a discretionary grant by Tunbridge Wells council totalling £20,000 and a further £30,000 in disabled facilities grant from the government.
Writing online his parents said: “This will not cover the single-storey extension needed to future-proof his room which has been quoted to be £135,000.
“We are currently awaiting a stair-climber and hoists to be fitted as an interim measure as he is too heavy to be carried upstairs safely and therapists will no longer lift him. On top of this his specialist bath alone is £16,000.”
“Kit has huge potential to improve, we’ve seen him progress in strength and flexibility, vocalisations and eyesight improvements and it’s only been two years since the traumatic incident.
“He has defied everything the doctors said, but in order to continue to improve he needs the space within our family home.”
