Donations account:

Account number: 1059223030

Bank code: 200 505 50
Bank: Hamburger Sparkasse

Donations from abroad:

IBAN: DE5020050550 1059223030
BIC/Swift Code: HASPDEHHXXX


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Imagine your child gets blind
And this is just the beginning

The first signs of juvenile NCL become noticeable mostly a short time after school enrolment with the beginning of an amblyopia. Because it is about a destruction of the retina, eyeglasses for correction are useless. The loss of vision proceeds very fast and leads to a complete blindness after one or two years on average.

Course of NCL diseaseOften in schools, about in the age of 8 years first evidences of mental degradation are striking. Firstly the child shows difficulties in the capacity of conceptional thinking, e.g. numeracy. Since the child becomes more and more aware of its disease, there are dramatic changes in personality. From the age of 11 on the articulation gets ostentatious. With 13 years the ability to communicate is often completely lost. Additionally, first signs of loss of mobility are seen in the age of 10.

The progression of the disease leads to a dependence on a wheel chair. Beyond that seizure disorders appear with variable frequency and magnitude. Ahead of the age of 20 the disease has reached a state, in which nearly all abilities are disappeared. The NCL patient looses any kind of control over the body function (muscles, bladder, gut).
A dysfunction of swallowing appears combined with the impossibility of an adequate supply with liquidity and nourishment. Then the patients decease of dehydration and respiratory paralysis.



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