Little Ella was born on 6 May 2016. The joy of her parents were overwhelming and everything seemed to be in order. When Ella was 14 months old, there were changes in her development. She began to squint, had a strange body tension and forgot to walk.
At the insistence of the parents a genetic examination was carried out and the result was devastating: Infantile neuroaxonal dystrophy.
This disease has only been diagnosed 150 times worldwide and is incurable. Ella will become deaf and blind. Epileptic seizures and spastic paralysis will increase and inevitably lead to death.
Ella’s fate has touched us deeply. Since the family now has to rebuild their new house in a way that makes it suitable for care and is dependent on all kinds of aids such as a nursing bed, wheelchair, walking aid etc., the family also has to bear high financial costs. Since this disease is so rare and leaves many questions unanswered, it is difficult to get support from the authorities. Paragraphs and facts are often about empathy.
This prompted us to financially support this family in their suffering in order to alleviate their worries about financing the necessary measures. We wish little Ella and her parents as much support as possible to ease the time they have left.