Since our last visit to NF Kontakt (NFK) little 2 room office carved out of the spare capacity of a national insurance company at rock bottom rent as a token of goodwill, Lions Heraldic returned to see them in action in the field.
I must admit I knew little about NF until this trip. What I knew was what I had gleaned from Wikipedea. After having spent an afternoon with 18 NF children I am amazed by the range of symptoms and side effects – it can be mild and it can be devastating. I am also surprised how little is known and how so many GPs are at a lost with this desease.
Games When I arrived at the site, somewhere off the ring of Antwerp, where they were having their 3-day training, the kids were well into their first activity of the day. The game was about getting the correct expectations and a defensive behaviour towards internet social networks. In fact a lot of what NFK does is about teaching these kids how to protect themselves. In view of their vulnerability and the ever present dangers of misuse on the internet these days, it is a worthwhile activity. But there weren’t any computers in sight. Why? Because they cost too much. And to have a better control over the simulation, they chose a product by Child Focus called ClickSafe.
Games are an important means. Baden Powell used games to introduce military skills and discipline to youngsters. Children learn with pleasure through games. And it is not surprising that the day was packed with games.
NFK took games so seriously that they have invited Centrum Informatieve Spelen of Leuven to conduct a series of games; not just any old games but games that are character forming and team binding. Unlike games that you and I play, these games are non-competitive. Instead they drive the kids to work with others as much as possible to achieve the objective of safe-guarding the ‘survival’ of the group as a whole. The objective is imaginary enough but it nevertheless fires up the kids’ instinct to collaborate and their desire to reach out to others.
But competitiveness is a necessary evil in our society. The kids must learn to compete. So there was a game in which kids worked in groups. Community gave way to tribalism. To win in this game, you must seek the help of another group. While playing kids learn what to give and how to take.
A long hard slog An NF sufferer is taken through a programme by NFK, over 4 years, to learn how to be independent, to find a job, to lead a life and to handle all things that we non-sufferers take for granted, such as making friends, maintaining friendship, deal with money matters, problem solving, planning, etc. Non-sufferers normally acquire these skills at schools, through social interactions and from parents. But the pace at school is too fast for them, the society does not have the time for them and mostly, their parents are ill equipped to help them.
NF children go to school but some of them need special help at school. Depending on the schools, this special help may or may not come by. NFK, through parents’ invitation to the schools’ Education Councils, gets a chance to influence the school and to help the sufferers. Such help can come in the form of ‘buddying’ – classmate assigned to look after the affected child, easier homework or something else. This has to be tailored as every NF child is different.
God helps those who help themselves NFK started as a spontaneous self-help group in 1988 with 60 families who were affected. Today, 22 years later, it has over 1,000 members. Statistics like these can be misinterpreted because a member of the group, except for the volunteers, has an unhappy medical story to tell. But the statistics demonstrate the need and that NFK is doing the right things.
15 fold increase in membership in 22 years must have a lot of stories. I’ve picked up a couple which I think are worth citing.
In 1988 almost nothing was known about the disease. With an average ratio of 1 case in 3,000 it was difficult to conduct scientific studies and it was also often an excuse to be sidelined. In 2000 NFK forced a hand and challenged Prof Freyns of KUL to give him a ‘sample population’ of NF sufferers. A young researcher by the name of Legius was in the meeting and it caught his interest. Legius has since become an important authority in NF, a professor of Human Genetics at KUL and a volunteer for NFK.
As so often GPs were ignorant of the desease at that time, NFK decided to act and very cleverly arranged to have a book on NF written by 2 American doctors translated into Dutch. They then convinced the publisher to print the copies at a nominal €1 per copy so that NFK could give every family a copy to be handed over to their family GP. The family GP could not possibly say that he or she did not know.