In early 2010, scores of children across Britain started to experience unusual symptoms. Although outwardly healthy, they suddenly began to lapse into uncontrollable sleep, sometimes nodding off up to 30 times a day. Their parents thought they were putting it on, or staying up too late, and only sought treatment after weeks had passed. Eventually, doctors got to the bottom of the problem – the children were suffering from narcolepsy.
Several months later, as desperate parents continued to comb websites and chat rooms for advice on how to deal with the symptoms of the devastating sleep disorder, a pattern began to emerge: all of the afflicted children – around 1,000 across Europe – had been given Pandemrix, the swine flu vaccine.
One of those children is Xander, from Plymouth.
Now nine years old, he is beset by sleep problems, waking frequently throughout the night. He has ballooned to seven stone, twice his natural weight, because every time he wakes up, his brain believes it is time for breakfast.
“He used to get into the cupboards and help himself to food,” says his mother, Michelle. “We found a big stash of empty wrappers, which he’d hidden. We’ve had to stop buying snack food or keep any in the house.”
A number of children like Xander have been filmed in C4’s The Kids Who Can’t Stay Awake. Professor Paul Gringras, a sleep disorder specialist, tells the programme that the condition can cause “irresistible and unpredictable sleep attacks that happen at any stage during the day. It can be devastating.
People assume that because people with narcolepsy are so sleepy, that at night it’s no problem and they’re going to sleep deeply. But actually, instead of sleep being the calm and restorative process that it should be, dreams pop up in a random way and they are incredibly vivid. It becomes very difficult for young people to differentiate if this is actually a dream or is it really happening. And it can be absolutely terrifying. They’re frightened of going to bed.”
Xander also has those fears. “He sings to try to keep himself awake, he’s worried that if he goes to sleep he’s going to have a nightmare,” adds Michelle.
A government-backed study has shown that approximately one in 55,000 children who received the Pandemrix vaccine were at risk of developing narcolepsy, 14 times the normal risk level. Some families are suing GlaxoSmithKline, the makers of the Pandemrix vaccine. The drugs company said: “Patient safety is our number-one priority and we are actively researching the observed association between Pandemrix and narcolepsy.”
Separately, the families have so far been refused compensation from the government’s Vaccine Damage Payment Scheme, as the scheme’s assessors have not judged the disease serious enough to merit redress.
The families reject the claim. Michelle says, “They’ve accepted that the vaccinations are likely to cause the narcolepsy, but there’s a threshold you have to meet; you have to be more than 60 per cent disabled, and they won’t yet accept that people like Xander are. But the guidelines are based around industrial accidents like losing a hand, which is just not appropriate to what he’s suffering. If you lose a hand you can keep on going to school and living a normal life. But with narcolepsy, you just keep on going to sleep.”
The children also suffer from personality changes. As Xander’s father, Nick, says, “Xander was very outgoing, very playful, very active. But he’s become withdrawn. He used to have lots of friends to play football with, but he finds it hard to relate to them now.”