The parents of an 11-year-old boy with a neuromuscular condition that causes his internal organs to be crushed by his spine are desperate to raise £50,000 for surgery.
Little Kai has a 90-degree curve in his spine, and he needs an operation to insert a metal rod. The superhero-loving little boy hopes the procedure will make him just like his favourite character – Wolverine.
Kai, a British national, who lives in Bali, Indonesia, with his parents and little brother Cal says: ‘Wolverine is my favourite superhero. I want to be strong like Wolverine. Getting a new spine would make me happy.’
Kai’s parents, British charity worker Brad Moreland, 44, and his wife Twone, 43, first noticed a problem when Kai was around 11 months old. He had problems sitting up, he struggled to crawl or walk, his parents suspected he had hip dysplasia, which can cause dislocation.
But nothing prepared them for his eventual diagnosis aged five, after extensive investigations, of Andermann Syndrome – an inherited neuromuscular disorder.
The rare condition – affecting less than one in a million people worldwide – damages the nerves used for muscle movement and sensation, and it usually causes absence or malformation of the tissue connecting the left and right halves of the brain – leading to epilepsy and tremors.
Kai also developed severe scoliosis, or curvature of the spine, a tight Achilles tendon and foot drop, causing his feet to drag.
Now, with his condition intensifying by the day, he needs urgent surgery in the nearest viable major centre, South Africa, to stop his internal organs from being crushed as he goes into puberty.
Twone, who has launched a GoFundMe page to raise the £50,000 they need to cover costs, says: ‘To see him sit up straight will be huge and long term, this surgery will be saving his life.
‘When he was a couple of months old we noticed a tremor, and his head would start shaking. Two of my closest friends had babies around that time and they were different.
‘They were crawling, sitting, while all Kai’s milestones were delayed.
‘But my pregnancy was normal. Everything was perfect. He was born by emergency C-section after his heartbeat slowed down, but he was a perfect baby.’
While Twone and Brad, who have been married since 2008, were concerned, they did not suspect anything serious as Kai had some tests but nothing was revealed.
Twone adds: ‘We thought he had hip dysplasia, as we were having x-rays but never in our wildest dreams did we think anything was really wrong. We just thought he needed adjustments.’
But, at 15 months old, as well as having persistent tremors, Twone noticed that Kai’s feet were turned out, although neurologists failed to make a diagnosis.
Then in March 2012, he was rushed to Hong Kong Adventist Hospital with a 39 degree fever. He was diagnosed with Kawasaki disease, an inflammation of the cardiovascular system, which normally affects children under five.
Covered in rashes, he needed a life-saving blood transfusion, leaving his terrified parents fearing the worst.
‘We were so afraid,’ says Twone. ‘We thought he was going to die in hospital. He had a seizure during his transfusion. We had never seen anything like it. We were terrified.
‘We had friends and our pastor praying for him. Brad’s mum even flew in from Australia. We thought this was it.’
For the next three years, still only able to crawl, the family were determined to find the cause of Kai’s neurological issues, putting him through a barrage of difficult tests.
‘Kai went through a few years of brutal testing, MRI after MRI every few months,’ says Twone.
‘They stuck needles into his arms and feet, but he had no reflexes. It was as if he couldn’t feel anything. It traumatised him and us.
‘At every other doctor’s appointment he was anxious. He’d be screaming and crying.’
Still, no diagnosis was made.
In April 2015, Kai started having major seizures every few months, with the first one lasting 67 minutes and leading to a diagnosis of epilepsy.
Recalling the first massive seizure, Twone says: ‘When Kai went to sleep one night, he started convulsing throughout his whole body.
‘We called an ambulance and he ended up in intensive care. He was convulsing for 67 minutes. He was in the ICU for the weekend and they diagnosed him with epilepsy.
‘It was such a shock to us. He could have died that night.’
Around the same time, the family were encouraged to look into genome sequencing to find out if Kai’s condition could be genetic.
Meanwhile, on heavy medication and still undiagnosed, poor Kai started hallucinating and even forgot who his own mother was.
Sleeping with him every night to make sure he did not start convulsing, Twone says he had seizures around every three months.
‘We had to lie with Kai every night until he fell asleep for an hour or more, so he had passed that seizure place,’ she says.
Finally, in October 2015, hospital doctors called asking for blood samples as they believed they had a diagnosis following results from the genetic testing.
A few weeks later the couple met with a geneticist, a neurologist and a social worker and were told he had Andermann Syndrome and might never talk beyond a few words or walk.
‘We were terrified,’ says Twone. ‘They sat us down and for 45 minutes told us his diagnosis. We were in complete shock. We couldn’t believe it.
‘They told us he may never walk, he may never talk, he will be wheelchair-bound. He’ll have foot drop. It broke our hearts.’
Kai now has physiotherapy, speech therapy and occupational therapy four days a week – something he will need for the rest of his life.
He has also been to South Africa for stem cell therapy to help with his shaking and surgery in a bid to help untwist his body in 2018 that was, sadly, unsuccessful.
Drowning in medical bills, later that year, the family moved to Bali to save money but also to give Kai more space for his medical equipment and for him to roam around in his wheelchair, as well as to spend more quality time together.
‘We’ve spent everything we had on his therapy,’ says Twone. ‘But we still live in fear of his next seizure.’
Since his scoliosis diagnosis in 2015, the curve of his spine has gone from 18 degrees to 90 degrees, meaning surgery is now essential.
Twone says: ‘His spine has rotated and has twisted his rib cage. I am worried his nerves are trapped because of how curved it is.
‘He can’t move his legs anymore. He has to use his hands to reposition his legs. And I sleep with him every night so he can be in the right position.
‘It’s like having a newborn baby.’
Now, Kai’s condition has deteriorated to a point where he needs surgery within months.
Fearing his spine could soon curve into his body and crush his internal organs, the family have been told a procedure called posterior spinal correction is essential in the early part of this year.
If Kai has a growth spurt at puberty, his spine will curve too much for it to be possible.
‘They told us that this condition is very rare, but from their research his life expectancy could be late teens to mid twenties,’ Twone adds. ‘It was earth shattering.’
Kai’s parents have found a world-leading neurosurgeon in South Africa who is prepared to operate, but surgery is not covered by their medical insurance, so they need to raise £50,000 to cover costs.
Brad, who quit his job as a banker in order to help care for Kai and now works for a non-profit organisation that builds schools in developing countries, says: ‘I think this surgery will be life changing.
‘I’m not delusional. I know it will be a difficult recovery and that he will have to get used to his new life.
‘But to know his spine will not crush his organs in the future, gives us a lot of peace of mind.
‘It’s relief to think we can remove his pain, protect his organs and he will not have to wear an uncomfortable brace every day, as he does at the moment.
‘We just want to be able to hold Kai in our arms without hurting him.’
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