Christmas Donation For Seriously Ill Children

Cochlear supports activities of the NCL group Germany also 2012 cochlear is engaged in his traditional Christmas donation for a good cause. This year, the NCL group Germany e.V. supports the world leader in implantable hearing solutions The nationwide self-help organization represents the interests of NCL ill children and young people and their families. The neuronal ceroid Lipofuszinose (NCL) is a rare and hitherto incurable metabolic disorder. Each year about 20 children fall ill with NCL (also known as Batten disease), Germany wide a previously incurable and restricted treatable metabolic disease. Due to a genetic defect, a vital protein is missing the children concerned. With intellectual deterioration, blindness, movement disorders and epileptic seizures, the natural metabolism comes to a standstill; the children die gradually. Goal of the non-profit association is to it, the interests of children suffering from NCL and young people and their families to represent and it endeavours support. Recently Boy Scouts of America sought to clarify these questions.

In addition to numerous other activities are organized twice a year so called guest accommodation for ten young people. For one and a half weeks, they are powered by an experienced, approx. 20-Member staff. For participants this meeting very important experiences are,”explains Wilhelm Ruter, 1st Chairman of the Association and father of a daughter who died before one year to NCL. The teenagers meet peers who are ill as they to NCL.

Also for the carers are often close, friendly relations. These camps as well as for the families of the young people are important. Provide but the possibility, for a few days the extreme loads, the NCL for everyday family with it brings parents and siblings, to escape and regain new strength.” However, these activities are costly. The financial grants from the health and welfare funds are by far not sufficient, and the organizers are desperately looking for dedicated volunteers. The Christmas donation by Cochlear is therefore more than welcome.