Tuesday 21 August 2018

'It's been an extremely tough eight years for Ben waiting for help' - family of boy with narcolepsy

Ben Blackwell (13) with his parents Natalie and James and his sister Sam
Ben Blackwell (13) with his parents Natalie and James and his sister Sam
Ralph Riegel

Ralph Riegel

The Blackwell family are pro-vaccine, so the decision to get jabs against swine flu in 2010 was a given.

Unfortunately for Ben Blackwell, who was just five years old at the time, he later developed the sleep disorder narcolepsy.

This means he would eventually require stimulants just to stop him from falling asleep during the day.

Despite this, he also needs naps up to five times a day and then struggles to sleep well at night.

To make matters worse, Ben's narcolepsy, known as Type One, is so serious he also developed a condition known as cataplexy.

This is where the sufferer's body basically goes into a physical and neurological shutdown - the person freezes and is unable to move.

Cataplexy is usually triggered by feelings of high emotion or excitement.

But what has really added to the family's trauma - as it has for 100 other Irish families hit by vaccine-linked narcolepsy - has been the State's response.

Or, rather, the State's lack of response.

Difficult

The State has decided to contest support claims.

"It has been an extremely difficult and protracted process," Ben's father, James, explained.

"It is long past time for the State to step up to the plate on this and do the right and decent thing for these youngsters, young adults and their families."

James is a member of Sound, the group which lobbies for the rights and supports of narcolepsy sufferers.

Ben is now 13 and doing very well in Ratoath College in Co Meath.

His family are very grateful for the incredible support shown to Ben at the college and at his primary school before that.

But James admitted it has been a very tough eight years. It took almost 18 months to initially diagnose Ben as having narcolepsy and even longer to develop a support and treatment regime that worked.

"He was barely able to function (in the beginning). But this is something he (Ben) will have to live with," he explained.

"We now want the State to do the moral thing. We want them to provide a support pathway for these children and young adults."

Irish Independent

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