About Us

Having a child with a life threatening disorder is always terrifying but living with AHC is even worse because the symptoms are always changing.

According to the scientists that discovered the cause of AHC these children should be able to have a treatment for their condition to stop the deadly attacks that can happen at any given time but why is there no treatment?

The reason is the high cost of drug research and development. Pharmaceutical companies are not interested in producing a drug for a few thousand people because they do not see a profit.

The AHC parent organisations are struggling to raise funds and it really is a race against time.

During the making of this film 6 children passed away because of the disease.

In the film, we take a sneak peek into the life of Sunna Valdis, who is a wonderful little girl that lives with her family in Iceland.
The documentary gives an excellent insight into the difficulties that they have to endure on a daily basis.

We learn about the disease from doctors, researchers and families on both sides of the Atlantic. We learn why AHC is such an important disorder to discover and manage not only for AHC patients and their families but also for millions of people all over the world that suffer from other neurological disorders.

The question why rare disorders are not being treated as well as they should be and why more researchers should be interested in AHC is indisputably answered.