Hundreds of Ceres student society members and ex-members took part in a flash mob to draw attention to Locked-In in Hoog Catharijne in Utrecht last Friday. One of its ex-members is suffering from this incurable disease.
'We had in fact succeeded even before the flash mob,' said the beaming initiator and ex-member Koen Sturm afterwards. 'Hundreds of euros have already been transferred by bank to the foundation by supporters when they heard about our flash mob.' But he was still not fully reassured. 'I was very nervous before the event. I had no idea how many people would turn up. Although Ceres had given it publicity, it was still a matter of wait and see. It was good to see little groups of people hanging about restlessly at the venue starting from a quarter of an hour before the whistle was blown.'
And it did turn out well. In the blink of an eye, the shopping complex was full of gaming people dressed in red. Edwin Donker, a Ceres member for three years, felt that he had to be there. 'If you had no other engagements, you ought to be here taking part. It was a genial and joyful event. The flash mob is also something worth watching.'
The supporters were not the only ones who got wind of the happening. Sturm: 'Shortly before it started, six police agents showed up suddenly. Just for a second, I was afraid that we had to call the whole thing off.' But a short explanation satisfied the law keepers, and the flash mob could proceed.
Paul, the ex-Ceres member with Locked-In, had a blood clot in his brainstem several years ago. As a result, he lost all his motor skills within a few minutes, but remained conscious. Since then, intensive therapy has led to some improvements, but there are no good and complete treatments.
About fifty thousand people in Europe are suffering from Locked-In. They can be grouped into three categories. The worst form is complete Locked-In when the person is completely paralyzed. A milder form is classical Locked-In when patients can, just like Paul, only blink their eyes in the beginning. People with partial Locked-In can do more, such as swallow and turn their heads, which is what Paul can do currently.
More information about Locked-in and Paul's full story can be found at www.stichtingunlocked.nl