A mum has spoken of her “despair” after her five-year-old son was struck down with a mystery condition, which has resulted in him suffering from three strokes.
Last September, little Sebastian had his first stroke, which involved his face drooping and the right side of his body freezing.
Since then, he has suffered two more similar attacks which can often affect elderly people but are rarely seen in children.
Mum Kimberley O’Brien, 28, said she was “terrified” on each occasion and her fear has only increased in the months since because doctors have “no idea” what has caused the condition.
‘No one can say what’s wrong with Sebastian’
She said: “Until this happened I didn’t even know children could have strokes, they’re always something I only associated with older people.
“Every single person who I tell reacts in the same shocked way, they tell me they didn’t have any idea either.”
Kimberley, from Bradford, West Yorkshire, added: “Suffering the strokes was bad enough but now we are in a situation where no one can say what’s wrong with Sebastian.
“The doctors are baffled and so is everyone else, which is why I want to talk about what’s happened.
“I think there needs to be much more awareness of strokes in children so that we can start to learn about the condition and understand why it happens.”
‘I knew something was really wrong’
Kimberley, who lives with partner David O'Brien, 48, and her other son Hunter, three, said the first sign anything was wrong came on September 2 last year.
She was woken by Hunter at 1am saying Sebastian needed help.
Kimberley said: “He was kind of trying to get down from the top bunk of their bed but his arm was clinging on to the ladder.
“To see my son in that position was terrifying, I didn’t know what to do, I just knew something was really wrong.
“I was crying but also trying to tell Sebastian that he was going to be okay, it was horrible.”
Kimberley got Sebastian to the floor before dialling 999. She said he was struggling to move his body or speak and she identified it quickly as a stroke.
She added: “I told the call handler that it looks like a stroke, but to be honest it was just a passing comment because I didn’t think children could have them.
“Not even the paramedics entertained that as being an idea, which tells me how little is known about the issue.”
‘It was that moment of terror all over again’
Sebastian was rushed to hospital where he had a CT scan, and doctors told Kimberley it was likely her son had epilepsy and that his attacks had been seizures.
She says she was advised to keep an eye on her son and record him if he had another stroke, so doctors could view the footage and make a firm diagnosis.
Kimberley added: “We went home and kind of returned to normal.
“Sebastian seemed okay and I spent lots of time researching epilepsy so that I would know what to look out for.”
She said “everything was fine” until October 12 when Sebastian had two more attacks in quick succession.
Kimberley added: “We were at the table having breakfast when he just dropped his spoon into the bowl and he began to fall off his chair.
“It was that moment of terror all over again.”
‘We could have recorded his last moments’
She recorded the attack, now known to be a stroke, and continued to record later that same morning when Sebastian had another.
Kimberley said: “I’ll never get over the guilt of recording my son while he was having a stroke.
“I know it was what I was told to do but it felt wrong at the time and it still does now.”
The heart-breaking videos taken last October show what could have been Sebastian’s final moments as he suffered his second and third strokes.
Kimberley said couldn’t find the courage to watch the ‘terrifying’ videos for six months.
She said: “With hindsight we were recording his strokes and we could have recorded his last moments. We didn’t know it could be a stroke.
“It’s taken my six months to pluck up the courage to even try to watch them again - it’s so hard.
“One sentence could save a life. I could have potentially been filming his last moments, and it was only because of luck I wasn’t. And that’s terrifying to think about.”
‘I still struggle to get my head around it’
It wasn’t until later on in the month when she saw an epilepsy specialist and Sebastian had an MRI that Kimberley was told her boy’s attacks may not have been epileptic.
She said: “Three days later I got a call from the doctor, he told me to sit down so I knew something was wrong, all sorts of things were going through my head.
“When he told me that Sebastian had had three strokes I didn’t believe him. To be honest I still struggle to get my head around it now.”
Kimberley said she is speaking out now in order to raise awareness of childhood strokes and also to raise money for the Stroke Association.