Like most parents of her generation, Kaytee Jones regularly shares pictures of her two-year-old son Jaxon on social media. The days out at the park with friends, the kisses and cuddles, and occasional tears – all documented in full colour.
In one, Jaxon is taking a ride on a bright yellow toy tractor. In another, it’s bathtime – the toddler is washing his hair, looking adoringly up at the camera with huge blue eyes and a cheeky smile.
‘I’m so smitten… look at that face!’ Writes Kaytee in the caption.
Kaytee Jones, 28, from Nottingham, requires constant help from the NHS as her son Jaxon, who has complex medical needs, requires around-the-clock care
What mother doesn’t feel this way about their child?
But the 28-year-old nurse, from Nottingham, has more reason than most, perhaps, to be proud of her little boy.
As she says herself, every milestone ‘feels like a minor victory’ for Jaxon, who was, doctors feared, unlikely to survive to see his first birthday.
The toddler has not one, but two rare genetic illnesses – and a heart condition – which his paediatricians at Great Ormond Street Hospital say is ‘unprecedented’.
He spent most of the first year of his life in hospital but defied the odds, despite countless infections and other life-threatening crises.
His tiny body can’t retain fluids – and he is at risk of fatal heart problems.
Now living at home, the toddler needs round-the-clock care which must be carried out with military precision.
Without this, his consultants have admitted he could die.
Little Jaxon, pictured, spent much of the first year of his life in Great Ormond Street Hospital in London. With the support of his local NHS, he has been able to return home to Nottingham, although that funding is now under threat
It is an exhausting regime that would simply not be possible without help from a team of care workers. Yet his local NHS provider has threatened to take this away. Astonishingly it says he is not disabled enough.
Jaxon was initially entitled to support under the Children and Young People’s Continuing Care Framework, which is overseen in his case by Nottingham North and East Clinical Commissioning Group.
Designed specifically for youngsters with complex health needs, this can entail anything from round-the-clock help from specialist nurses to weekly visits from a care team, depending on the decision of an independent assessor.
Whether or not funding will continue now hangs in the balance.
Over the past two months, the toddler has been reassessed by his local NHS team.
Kaytee has been told in no uncertain terms that he is now ‘ineligible’ for the payouts. She appealed against the decision, and while care continues at present, she is now ‘in limbo’. Her lifeline could be cut at any moment.
Like many young mothers, Kaytee has updated people on her son's development through social media, although, unlike most toddlers, Jaxon has complex medical needs
To say she is desperately worried, angry, hurt and frustrated would be an understatement.
‘I would love not to need carers,’ says Kaytee, who is separated from Jaxon’s father. ‘I would love for Jaxon to be able to go to bed and sleep all night without having to be watched over to make sure he doesn’t suffocate, or be medicated at 8pm, 9pm, 10pm, 1am, 2am and 6am, or have his nappy changed ten times. I would love for him not to need hours for every meal time, or hours of physiotherapy – which is working, by the way, as he can now push himself up to crawl and bum-shuffle to get himself about the house.
‘I dream about our lives not being dictated by doctors and hospital appointments, and therapy and machines. But that’s what Jaxon needs. And he needs carers, to keep him safe.
‘It’s not like I’m asking for a luxury, or a nanny to look after him for me. I just can’t do it all alone.
Young Jaxon, pictured, has 1p36 deletion syndrome and also Bartter syndrome. Both of these conditions are incredibly rare and to have both is 'unprecedented'
‘As it is, I probably sleep four nights out of seven. I’m terrified by the idea that I might be so tired, I fall asleep and miss something that endangers him. I just want my son to be safe.’
Kaytee’s MP, Vernon Coaker said the situation was ‘a disgrace’ adding: ‘You don’t need to be a health professional to see this is a young mother doing everything to care for her young son, who has very complex needs.
‘There shouldn’t be the slightest doubt that he receives care. But she’s having to fight for that, and she shouldn’t be. We also need to ask, how many more like her are out there?’
Jaxon was born in August 2017 and his problems began almost straight away – he was sleepy, and floppy, struggled to feed and to hold milk down.
There were infections, fraught trips to and from hospital and stints in intensive care. At just a few months old, Jaxon was discovered to have 1p36 deletion syndrome, and later Bartter syndrome, both incredibly rare genetic faults that cause a wide range of physical, communication and learning problems. He can’t walk due to poor muscle tone in his legs, or talk or swallow, so must be fed via a tube directly into his stomach.
At one point he was sick up to 50 times a day, often without warning – and he has to be watched over constantly to make sure he doesn’t choke. For this reason, he can’t have large meals. Instead, even through the night, he is fed tiny amounts so he doesn’t become malnourished. Still, he regurgitates liquid into his mouth, meaning he risks choking in his sleep. He needs nappy changes every hour or so, even throughout the night. He can’t communicate to say if he’s hungry, full or in pain – although he often must be.
That he is mostly well, despite his many difficulties, is testament to Kaytee’s devotion – and her meticulous attention to carrying out to the letter his care plan, which details what needs to be done to keep him well. Take breakfast, a two-hour process.
At 6am, Jaxon is given medication, then 180ml of cooled peppermint tea via the feeding tube, which soothes his digestive system, making vomiting less likely. At 6.30am, he has medication. The feeding pump has to be paused and disconnected for this.