CCTV cameras keep Hove toddler alive (From The Argus)
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CCTV cameras keep Hove toddler alive
11:15am Tuesday 25th September 2012 in News By Anna Roberts, Crime reporter
CCTV cameras keep Hove toddler alive
Miracle toddler Ollie Johnson is kept alive by CCTV cameras.
The adorable 17-month-old, from Ingram Crescent, Hove, has an incredibly rare illness which means he can have up to 16 seizures a day.
Children with Dravet Syndrome – the name for Ollie’s illness – are tragically prone to dying in their sleep as their oxygen levels often drop dangerously low during seizures.
But mother Sarah, 32, and father Stephen Johnson, 28, explained how a complex system surrounding his bed keeps him alive.
The pair have bought CCTV cameras for his room – one hangs over his cot and another hangs by the wardrobe – which are connected to cameras in the living room and his parents’ bedroom. He also sleeps on a special mat where if his body shakes in a seizure it issues an alarm, alerting his parents.
Ollie also has an oxygen saturation monitor, which sounds an alarm if he stops breathing.
Mrs Johnson, who used to work for Scope but is now a fulltime mother, said all these items had repeatedly saved Ollie’s life.
She said: “I can’t imagine life without his equipment. They allow us to sleep.
“The CCTV cameras are brilliant because they allow us to check on Ollie without walking into his room. If we went in he would see us and want to get up.
“We have them on all the time. We are still fighting for home oxygen so we can treat him here.
“You can’t call an ambulance up to 16 times a day, especially because I have young twins.”
Ollie, who is a proud big brother to four-month-old Harley and Hayden, learnt to walk at nine months old but is set to regress.
Youngsters with Dravet Syndrome usually lose their ability to walk and talk, so Sarah has learnt sign language so she can communicate with her little boy.
The tablets he takes for his illness, which incorporates all forms of epilepsy and is life-long, lead to a lot of children losing their appetite and being tube fed.
Ollie was diagnosed with Dravet Syndrome, which affects about one in 40,000 children, in April this year, although his problems started when he was four months old.
Mrs Johnson said her son, a Brighton and Hove Albion fan, was “cheeky” despite being so ill. She said: “He is absolutely amazing and always smiling.
“He loves building bricks and while he can’t go out much because he is prone to infection he is happy.
“He loves his little brothers and is always kissing them. If a blanket falls off then he will straight away put it back on them.
“Everyone who meets him melts because he is so friendly and talks to everyone.”
The family is now raising money for Dravet Syndrome UK. To donate visit Justgiving.com/ollie210411 .
Ollie's Nanny Dianne says...
10:33pm Tue 25 Sep 12
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed. These conditions include:
behavioral and developmental delays
movement and balance issues
orthopedic conditions
delayed language and speech issues
growth and nutrition issues
sleeping difficulties
chronic infections
sensory integration disorders
disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)
Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.
Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children is poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.