Toddler with rare form of epilepsy died after seizure on Christmas day

June 27, 2014 | by | 0 Comments

A toddler with a rare illness that required constant monitoring died after a seizure on Christmas Day.

Two-year-old Ollie Johnson had Dravet syndrome, a life limiting form of epilepsy that affects around 1 in 40,000.

Ollie’s parents Sarah, 32, and Stephen, 28, had set up CCTV in Ollie’s bedroom so he could be monitored round the clock.

Ollie with his younger twin brothers Hayden, left, and Harley, right

Ollie with his younger twin brothers Hayden, left, and Harley, right

But the toddler suffered a severe seizure last Christmas.

He was rushed to hospital in Brighton and later transferred to London but died on December 27.

Heartbroker Sarah said: ‘Ollie was fine & so happy on Christmas day, but he went into Massive seizure just before 6pm, which lasted for 3 hours before being put into a medically induced coma at Brighton.

‘Ollie was then transferred to London late afternoon on the 26th December.

Ollie suffered up to 16 seizures a day and needed constant monitoring

Ollie suffered up to 16 seizures a day and needed constant monitoring

Ollie with father Christmas

Ollie with father Christmas

‘Sadly Ollie never regained consciousness, and passed away in my arms on the 27th December in a London hospital.’

Sarah, who gave up her job with charity Scope to become a full time mother, also has one-year-old twins Harley and Hayden.

She said that she will now raise awarewess of the condition.

‘Ollie had a pacemaker fitted as he had a complete intermittent heart block,’ Sarah added.

‘He truly was the bravest most beautiful person i know, he is my hero.

‘I just want to continue my goal to raise awareness of this condition as I can.’

Sarah has set up a Facebook page to raise awareness of the condition. https://www.facebook.com/OllieJohnsonDravet

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