Tim's story

Spring 2001: Together with his friends, Tim (6 years old) is running around the garden to the tree house. His big eyes are shining while he is quickly climbing up the ladder. The last to reach the top has to get the sand for the cakes.

Summer 2001: During a car ride Tim's father notices that Tim does not recognise letters he used to know. An "R" becomes a "P" as in Papa (German for "Dad"). Following extensive eye exams the first (oftentimes false) diagnosis: RP. Retinitis Pigmentosa, an eye disease that also leads to blindness.

Autumn 2001: After a blood - and a human-genetic examination in the Hamburg university-clinic the deadly metabolic disease NCL is diagnosed.

Winter 2001: Supported by Round Table Dortmund Tim's father starts a project-initiative against NCL. A race with time begins, the National Contest for Life - NCL.

Summer 2002: The NCL-Foundation is established. Tim has already lost 90% of his eyesight. Sometimes Tim asks: "Dad, have you found a cure yet?"

Spring 2003: Tim's birthday. He turns eight years. Carefully, he feels himself through the apartment. His gaze is empty. He is surrounded by darkness. In less than 2 years, he has lost his vision. And that is only the start. Fortunately, he is not aware of that.

Spring 2005: In the meantime Tim has reached the age of 10 and attends the school for amaurotics. Since he couldn´t cavort with his friends outdoor any more, his soft toys grew important for him once again. He knows all the names of his 40 animals by heart. But there are first indications that the capacity of his memory decreases.

Winter 2006: Tim's steps are getting shorter and shorter. It is hard for him to walk. His speech also suffers because of the disease.

Until now: Without a cure due to lack of research Tim's future is foreseeable:

His gradual mental degeneration will lead to Tim not being able to learn anything anymore and he will even lose the ability to do the things he has already learnt.  His loss of speech is especially hard. Not being able to communicate, not being understood will lead to aggression and depression.

In a few years' time he will suffer from epileptic fits which will confine him to a wheelchair.

At some point in the future Tim will be tied to his bed and because of swallowing difficulties he will only be able to drink through a tube.

When he is about 30 years old Tim will lose his fight against NCL and die.

Please help us to prevent this!