The boy who’s too terrified to laugh: 11-year-old Bobby collapses if he smiles

MEET Bobby Hunter an 11-year-old boy who is terrified of laughing.

Just a simple smile can have a devastating effect on the popular, rugby-mad Boy Scout.

Bobby should be the life and soul of the party and dreams of following in dad’s footsteps to become a firefighter.

But his family claim his life has been shattered by a flu vaccine.

It was administered by a nasal spray nearly a year ago and his parents say he has since been plagued by fits, where he suddenly collapses.

Smiling, getting the giggles and laughing are all triggers for his terrifying condition, said mum Amanda, 36.

She’s now left with the heartbreak of watching her son go through life stifling his emotions.

“He strives to cope,” said the NHS clerical worker.

“But we know in our heart of hearts that he shouldn’t be burdened with this.”

She said Bobby has gone from being a “happy-go-lucky boy” to one dreading narcolepsy fits, where he falls asleep suddenly, and terrified of cataplexy seizures, where he collapses yet is still aware of the outside world.

Despite the underlying horror that now threads through their daily routine, dad Bob a watch manager with the Scottish Fire and Rescue Service in the Borders said the family all strived to make life as normal as possible.

And if that means risking watching the occasional funny film, then so be it.

“Bobby copes well despite the burden he carries,” said Bob.

“We have to work hard to keep his life as normal as possible.

“If there is a funny movie on TV we all still watch it, as it’s important there is fun in Bobby’s life, even if it does prompt cataplexy.

“But it has been devastating seeing our son change from a very energetic boy to one who struggles to stay awake.”

The 43-year-old is a brave hero to his son.

But he admits he was saddened by one recent encounter between Bobby and his doctor.

“Bobby asked his hospital specialist, ‘Will this be for the rest of my life?’ and when the consultant answered, ‘Yes’, he just sank back into his chair.

“It was heartbreaking to watch.”

Amanda also admits it’s been hard adjusting to their new life.

“Bobby is scared to laugh, the cataplexy has affected him so much,” she said.

“When he laughs he has a sudden onset of transient muscle weakness and often collapses, even though he remains fully conscious and aware. It has been painful to watch.”

Bobby drops off continually and often finds himself dozing off in class at school.

He’s only able to sleep in 45-minute cycles at night, leaving him permanently exhausted.

He always needs to be accompanied when he goes swimming, and brother Riley, 14, or sister Christie, 12, always go with him to the shops in case he collapses.

The family have linked his medical problems to a flu-fighting drug he was given.

“Within weeks of getting the flu vaccine he was sleeping excessively through the day and never looked or felt rested,” added Amanda.

“Bobby was a healthy boy until then and never suffered any illness that would have triggered this.”

Bobby with parents Amanda and Bob (pic: Alistair Linford)

After the attacks started, concerned Amanda took videos of Bobby collapsing on her phone and, after showing them to experts at her local hospital in the Borders, Bobby was referred to the Royal Hospital for Sick Children in Edinburgh where specialists confirmed her fears.

Amanda and Bob blame the drug and claim the Scottish Government is failing to give parents vital information on the vaccine’s potential side-effects.

“We trusted the Government to be honest and include all risks in its immunisation leaflet and online patient information link,” Amanda added.

“But no mention of the link to narcolepsy is there.”

The family have reported their son’s claimed vaccine damage to watchdog body the Medicines and Healthcare Products Regulatory Agency.

Jackie Fletcher, who runs a support group for families affected by vaccine-related health problems, understands all too well the problems the family is facing.

“Parents are not being given informed consent to adequately decide whether children should be vaccinated,” she said.

The European Medicines Agency lists narcolepsy and cataplexy as an “important potential risk” of the flu spray Bobby was given, based on information supplied by makers.

However, a Scottish Government spokesman has denied parents are ill-informed when it comes to possible side-effects linked to the healthcare measures.

She said: “The parents of all children who receive the seasonal flu vaccine through school are provided with information and a consent form prior to vaccination.

“Seasonal flu vaccines change from year to year.

“There are no known links between the seasonal flu vaccines used in 2014 and narcolepsy.

“Current advice is that benefits of seasonal flu vaccine outweigh risks.”

The Medicines and Healthcare Products Regulatory Agency said it was aware of a number of similar cases.

A spokesman said: “Our warning system, the Yellow Card Scheme, helps us to identify previously unrecognised suspected adverse reactions.

“It also provides valuable information on recognised adverse drug reactions, allowing us to identify and understand risks that may affect patients.

“It is important to note that a report of an adverse drug reaction does not prove that it was caused by the drug.

Other factors such as the underlying disease or other medicines may contribute to suspected adverse reactions.”

A spokesman for drug maker AstraZeneca last night said they were “deeply saddened to hear of a child in Scotland developing narcolepsy and cataplexy”.

The spokesman added: “Since our influenza vaccine’s first global approval in 2003, more than 97 million doses have been distributed globally and no causal link has been determined to either narcolepsy or cataplexy.

“Patient safety and health are our highest priorities at AstraZeneca and all adverse events reported are thoroughly investigated to establish if any of our medicines adversely impact patient safety.”

In the meantime, Amanda has vowed to battle to staystrong for her son and to win answers.

“Our lives have changed but we know there are other families out there similarly affected,” she added.

Has your child developed narcolepsy or cataplexy after being given a vaccine? Call 0141 567 2776 or email jboyle@sundaypost.com