Big Mother: Parents monitor their toddler via CCTV cameras in his bedroom as he suffers up to 16 seizures a day
Ollie suffers from Dravet Syndrome – a neurological condition that causes severe seizuresHis parents have set up two cameras – one on his cot and one on his wardrobe – which are linked to screens in their bedroom and loungeFamily say set-up gives them peace of mind
13:45 GMT, 26 September 2012
A toddler is watched closely by his parents using CCTV because a rare condition means he is at constant risk of dying from a seizure.
Ollie Johnson, 17-months, has Dravet Syndrome and can suffer a seizure at any time sending his oxygen levels plummeting and putting him at risk of dying in his sleep.
Parents Sarah, 32, and Stephen, 28, Johnson have hardly slept since Ollie was diagnosed afraid he would have an attack in the night. But now they say they are living a 'real-life Big Brother' after installing two CCTV cameras on his cot. The cameras are linked up to screens in their bedroom and living room so they can always keep a watchful eye on him.
Demonstrating one of the CCTV monitors Ollie's parents use to keep a close check on him
Hooked up: Ollie Johnson wearing an oxygen saturation monitor (left) and one of the CCTV cameras (right)
The couple have also bought Ollie a special mat which sounds an alarm if he stops breathing.
Ollie also has an oxygen monitor attached to his toe, which sounds an alarm if the oxygen levels in his blood fall too low.
Full-time mother Sarah, who also has her hands full with four-month-old twins Harley and Hayden, said the specialist equipment, which was part funded by the charity Dravet Syndrome UK, has given the family 'vital peace of mind.'
Sarah, who gave up her job with charity Scope to become a full time mother, said: 'It is like big brother in the front room now.
'When we are watching TV I am constantly drawn to the screen. It is really comforting to know I can just turn round and see him.
'We never expected to have CCTV cameras inside our home, but they have now I cannot imagine life without all the equipment.
'We used to panic when Ollie had a seizure. I never wanted to go to sleep in case he had one in his sleep. Ollie has problems sleeping so the cameras allow us to check on him without walking in and disturbing him.'
Ollie, who lives with his family in Hove, Sussex, was born healthy but suffered a 45 minute-long seizure when he was four-months-old.
Stephen called an ambulance and Ollie was rushed to the Royal Alexandra Children’s Hospital, Sussex.
Despite carrying out several tests doctors were unable to identify what was wrong with him.
A month later Ollie had another seizure and in April this year he was eventually diagnosed with Dravet Syndrome by genetics specialists.
Ollie with his parents and twin brothers Hayden (left) and Harley. Dravet syndrome is caused by a defect in a gene required for the proper functioning of the brain cells
Ollie shortly after birth. His parents didn't realise anything was wrong til he had a seizure at four-months old
As soon as they knew the risks involved in the condition Stephen and Sarah rushed out to start assembly his high tech bed.
They bought two CCTV cameras, for about £100 each with one hanging over his cot and another hanging by his wardrobe were bought from eBay.
Ollie also has a £1,000 oxygen saturation monitor, which works by monitoring his heart rate from a specialist company. If the oxygen levels drop it sounds an alarm.
Ollie’s special mat, which cost around £300, detects a lack of movement and sets off an alarm if he stops breathing.
The family have ordered a seizure mat which will set off an alarm if he thrashes around in his cot – they had to wait for Ollie to be 18 months so he was heavy enough for the technology to work.
Ollie can have three forms of seizures – the most serious tonic clonic seizures, partial focal seizures, and the milder absent seizures which are like a daydream.
Sarah hooks her son up to a monitor that triggers an alarm if his oxygen levels drop too low. When he is a bit bigger he will get a mat that will alert his parents if he has a seizure
In July Ollie had seizures four days in a row, then in November he had a seizure that lasted for more than an hour.
Last Boxing Day the excitement of all his family being around him got too much for him and Ollie had 16 partial focal seizures in one day.
Stephen and Sarah have learnt the triggers that can cause Ollie to have a seizure, which include temperature changes, illness, tiredness and excitement, and try to monitor them.
Now Ollie, who takes Buccal Midazolam and Sodium Valproate at 7am and 7pm every day, has seizures about every fortnight, which last about 20 minutes.
Sarah added: 'Ollie is advanced for his age. I spend lots of time reading with him and talking to him.'
Dravet Syndrome is a neurological condition which affects about one in 40,000 children. It causes severe seizures and can lead to other conditions such as learning disability, ataxia and autism.
For more information about the condition visit www.dravet.org.uk