22Q11 deletion syndrome

@bennierex and I are parents of 2 beautiful sons. The youngest is 4 years old and has the 22Q11 deletion syndrome. A syndrome that occurs most after Down syndrome. One in 2000 children is born with it. No fewer than 195 disorders are associated with 22Q11: intellectual disability, psychological problems, speech problems, clefts, heart defects and much more.

As parents we notice that many people have never heard of this syndrome. Not only family and other acquaintances of us, but also doctors and other experts in healthcare. The diagnosis is therefore often made late. Likewise with our son. He was then 3 years old. After years of worrying and many doctor visits we came to a pediatrician who immediately pointed us to 22Q11. We recognized many features. After genetic testing, we received the definitive diagnosis. On the one hand, we were relieved that we know what is going on, but on the other hand also very sad and worried about the uncertain future.

This is a short video about the 22Q11 deletion syndrome:

In the Netherlands there is a foundation called Stichting Steun 22Q11. This wants to be better known for the genetic deviation 22Q11 in the Netherlands. Commissioned by Stichting Steun 22Q11, producer Hans de Kleine has made a documentary about this syndrome. He followed four people who were confronted with 22Q11. It would be great if this documentary could be broadcast on Dutch TV.

Today I have approached several Dutch television channels whether they want to broadcast the documentary. We want to make 22Q11 visible. Because unknown, makes misunderstood.

For the Dutch among us, here the trailer of the documentary: