A dad recalls the horror of finding his son 'all floppy' in his cot after the 19-month-old suffered a stroke in his sleep.
He was found by his mother, Ronnie Kerman, who discovered him unconscious in his cot on February 2, 2018.
She knew something was wrong immediately because she'd normally see the young Ronnie standing at the edge of his bed, waiting to be picked up, Hull Live reports.
But on that morning, Ronnie was laying on his back with the left side of his body 'all floppy'.
Parents Phil and Louise immediately rushed him to Hull Royal Infirmary where a CT scan revealed a black mark on his brain, showing that the toddler suffered a stroke.
The tragic incident makes Ronnie one of Britain's youngest ever stroke victims.
Soon after the scan, the parents were instructed to take the toddler to Leeds General Infirmary for treatment.
Ronnie was then diagnosed with an Optic Pathway Glioman and Beurofibromatosis Type 1 which has resulted in him becoming blind.
He has also since been diagnosed with Moyamoya disease which is caused by a blocked artery in the brain.
The young boy underwent several brain surgeries throughout 2018 and 2019 to treat the cancerous tumour inside his brain.
Initially, he was responding well to treatment, but things started going downhill when he became allergic to his chemotherapy.
The parents were told to prepare for "end of life care" for their then two-year-old son.
Phil said: "When the doctors spoke about palliative care, end of life care, I just couldn't believe it. I was really shocked because Ronnie had been doing so well and we were told the tumour on his brain had shrunk.
"But the tumour had grown a little bit and they said there was nothing else they could do. I just said to the doctor 'You've got to do something, you've got to help him and save his life'."
Doctors put Ronnie on Trametinib, a daily chemotherapy treatment that can be taken orally - he is the youngest patient in the UK to have been administered the treatment.
Phil said: "It's been absolutely fantastic. I couldn't ask for anything more really. He is just a little superstar, we never thought it would be this way.
"He'll turn six in June now and he can even 'bum shuffle' from the living room to the kitchen, even though he can't see, he knows where he is and where he needs to be, it's fantastic.
"He's a cheeky little boy now, and he is quite independent, he knows what he wants and likes. He enjoys music, everything from nursery rhymes to rock music like AC/DC."
The toddler has also benefited from sensory play using sensory boards and playing in the water - he has since grown fond of swimming and attends weekly lessons.
Hospital visits are a regular occurrence for Ronnie and he will be attending Hull Royal Infirmary next week to have his feeding tube replaces and treat his tooth decay which is a side effect of his chemotherapy.
To help Ronnie lead a better quality of life, a Life for a Kid volunteer, David Freer decided to fundraise £2500 for any additional sensory equipment that Ronnie would need.
As part of the money-raising efforts for Ronnie, David will be doing the Jane Tomlinson Hull 10K in June this year alongside his dog Lewis who is an NHS therapy dog.
In response to David's efforts, Phil said: "I have known of David because he comes with Lewis at the Hull Royal Infirmary, so Ronnie has previously met David.
"It's really amazing what people can do from the goodness of their heart, I can't thank him enough."
Contributions to David's fundraiser for Ronnie can be made on his JustGiving page.
