NCL-Entrance-page - Childhood Dementia

Life with NCL

Tim's Story


2001: When he was 6, Tim was a healthy child who played happily. He had just a slight sight problem. Blood and genetic tests showed the sad truth half a year later. After countless tests and a misdiagnosis of the eye disease Retinitis Pigmentosa, Tim was diagnosed with the potentially fatal metabolic disorder NCL.

2002: With the support of the German Round Table, Tim's father founded an initiative against NCL. A race against time began - the National Contest for Life. By the time the foundation was officiallyformed, Tim had already lost 90% of his sight. And that was just the beginning. Sometimes Tim asked “Daddy have you found a doctor yet?"

2003: By the time he was 8, Tim had to fumble his way around the flat; it had all become dark to him. In less than two years he had lost his sight.

2005: When he was ten, Tim started going to a school for the blind in Hamburg. There were the first signs that his memory was diminishing.

2006: Tim's steps became ever shorter. He found moving increasingly difficult. Even his speech suffered because of the disease.

2008: The first epileptic seizures.Tim could no longer go out alone. He often had to use a wheelchair.  The speech of his brain was severely damaged by NCL. Even those close to him found it incredibly hard to understand his speech.

2009: Whilst playing, Tim swallowed three magnets. Three difficult operations and several weeks in hospital followed. Tim suffered both physically and mentally. But he survived. His enormous will to live helped him to slowly regain his strength. But great anxiety remained.

2010: Tim entered puberty. But he couldn't express all these new feelings that he was experiencing. Permanent unrest, nervousness and mood swings made him become more and more isolated and caused many challenges for those around him.

2011: Tim became entirely reliant on his wheelchair. With help he can stand for just a couple of minutes. It's hard for Tim to swallow. NCL now also affects his eating.

2012: Tim can again spend time outside in the fresh air in his lounger and doesn't have to be tube-fed. Tim can still be part of school and family activities. But Tim's father knows that the disease has still not stopped its degenerative process.




Tim will lose the fight against NCL around the time that he is thirty. Bed-ridden, unable to see, unable to speak, unable to swallow, and finally, unable to breath. Tim shares his fate with around 700 other children with NCL in Germany. And more will follow, because without material and financial help the NCL Research will not be able to archieve its aims. Support us in preventing futures like Tim´s and join us in working towards a research breakthrough.

Photography: Stern 44/2012/ Nele Martensen

This German - English translation was done by the translators Tizzy Mann, Andrea Murphy, Kate Humby and Marcia Neff for the PerMondo initiative that involves providing free translations for NGOs. PerMondo is sponsored and run by the translation agency Mondo Agit.