Teenager Kai is determined to support genetics research
PUBLISHED: 07:00 05 August 2019
Kai Johnston suffers from a rare condition but that is not stopping him supporting an awareness campaign to ensure research into genetics continues in the UK.
The 15-year-old, from Sidcup, is helping to raise awareness of children's genetic disorders with the UK children's charity Genetic Disorders UK and their annual fundraising day, Jeans for Genes Day.
Teaming up means being able to wear jeans to work or school in return for a donation.
Kai's chronically low blood sugar was the first sign of a problem and he was eventually diagnosed with Kabuki syndrome.
This can cause symptoms including congenital heart defects, low muscle tone, feeding difficulties, cleft palate, speech and language difficulties, hearing problems, learning difficulties and kidney abnormalities.
Kai has the rarer form, meaning he is more severely affected than most children with Kabuki - he can't speak and has limited mobility.
But like a hero, he maintains a cheerful disposition and a particularly close bond with his dad, Neil, and brother Connor, who is 20 and studying fashion design.
When Kai was born three weeks early at Queen Mary's Hospital in Sidcup, there were immediately some issues with his breathing and with blood sugars.
Scientist mum Carol, 50, said: "The doctors tried to pump in glucose but his blood sugar still struggled to stay up and he suffered a seizure one night.
"He needed oxygen and feeding through a nasogastric tube. The doctors took some blood and sent it to Great Ormond Street Hospital but as there were no beds there, he was taken initially to St Thomas's. I had to travel there every day to see him - and because of my science background I was asking lots of questions.
"After three days Kai had to have a more permanent line put in for the glucose."
Carol and Neil, 52, who works part time for an events company, took their baby home after two months.
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Carol said: "Then we found he wasn't feeding properly - it took him an hour to suck a bottle - and we were meant to be feeding every three hours to keep his blood sugar steady, so our lives revolved around feeding.
"Connor, his older brother, had just started school, while we were going up and down to Great Ormond Street - it was such a stressful time."
Four months on Kai was back at hospital.
Carol said: "I had been hopeful it had just been a challenging start but at this point I had to accept there was a serious issue.
"In a way, it was a relief to hear the doctor thought something was up as it meant there was a reason for all this."
A geneticist mentioned Kabuki syndrome, and Carol said: "We Googled and found out what it meant, which felt pretty devastating. There was so much going on at this point, dealing with the diagnosis and also looking after Kai day to day. He had surgery to fit a gastrostomy to feed direct into his stomach, which was awful in one way but did help as he could be fed overnight with a pump and we didn't have to feed every three hours."
The devastating news was confirmed a few years later, and it was found Kai had a rarer more serious form.
Carol had to get back to work and Neil was made redundant and became his son's primary carer.
Carol said: "It was difficult for Connor growing up - he found it hard that we had to concentrate on Kai and his poor health when younger.
"Recently, though, he's said he wished he had spent more time with him and now they have a good relationship along with his dad."
Jeans for Genes Day runs between September 16 and 20.
Sign up a free fundraising pack at www.jeansforgenesday.org.