Search
Subscribe Newsletter
German Version  englisch.gif

Donations account:

Account number: 1059223030

Bank code: 200 505 50
Bank: Hamburger Sparkasse

Donations from abroad:

IBAN: DE5020050550 1059223030
BIC/Swift Code: HASPDEHHXXX



dzi_siegel.jpg

Tim's story

Tim and FrankSpring 2001: Together with his friends, Tim (6 years old) is running around the garden and 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 recognize letters he used to know. An "R" becomes a "P" as in Papa. Following extensive eye exams the first (oftentimes false) diagnosis: RP. Retinitis Pigmentosa, an eye disease that also leads to blindness.

Autumn 2001: After blood and genetic analyses in the Hamburg University Clinic, Tim is diagnosed with the deadly metabolic disease NCL.

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 old. Carefully, he feels himself through the apartment. His gaze is empty. He is surrounded by darkness. In less than two 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 a school for the blind. Since he cannot play with his friends outdoor anymore, his soft toys grow important for him once again. He knows all the names of his 40 animals by heart. But there are warning signs that his memory is failing.

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.

Fall 2008: His first epileptic seizures occur. Tim can no longer walk alone, and must sit in a wheelchair more often. The speech center of his brain is now severely damaged by NCL. Even people who have been familiar with Tim for years can just barely understand him.   

Summer 2009: While playing, Tim swallows three magnets. He undergoes three difficult operations and several weeks in the hospital.  Tim is physically and mentally on the borderline, but he survives. His enormous will shall slowly help him regain his strength, but for months after the incident, fear is a large part of his psyche.   

Spring 2010:  Tim has grown into an adolescent boy. But the symptoms of NCL have prevented him from letting his emotions run their course. Constant restlessness, nervousness, and mood swings isolate him even further and make high demands on those around him.   

Spring 2011: Tim is now confined to a wheelchair. Only with the help of the people accompanying him can he stand for a few minutes. It is also difficult to swallow. NCL has begun to affect his nutrition.

Until now: Tim can still spend many hours in the sun and fresh air. He does not yet have to be fed artificially, and he is still a part of school and many family activities.  But Tim's father knows that the disease has not stopped, and that the gradual degradation process will continue.

Tim will lose the battle against NCL around the age of 30 - confined to a bed, unable to see, speak or swallow, and at the last, unable to breathe.  And so it will go for many other young men and women, if NCL research does not find a successful therapy.  Let us prevent others from suffering from what Tim is going through. Join in helping to find a breakthrough in research.


Please help us to prevent this! Donate for Tim!


print.gif up.gif