Year of Birth: 2011
Parents: Claudia and Frank
Home Town & Country: Lieskau, Germany

A Message from Josephine’s Parents:

Josephine was born in February 2011 as a wish child. At that time, everyone assumed that she was healthy and alert. On the second day of life, Josephine was admitted to the intensive care unit, where we received a new diagnosis almost every day, including seizures, complex ocular pathology with blepharophimosis, microphthalmos, microcornea, and muscular hypertension.

Josephine lived a very withdrawn life as a baby, disliking closeness from anyone except mom and dad. She took oral food, very little but it was always enough that she does not need a feeding tube to this day. We were told that Josephine would probably never speak. When she was about four years old, she said her first word: “Oma” (german for “grandma”) – until today many words have been added. She is a calm and friendly child who is very aware of her environment, but no one can say how much. She is also quickly overwhelmed with external stimuli. Josephine has to fight again and again with strong spasticity. She loves the North Sea and its animals – at the same time she is totally relaxed.

In 2014 Josephine then became a big sister, the two are now inseparable. We only found out about her genetic defect in 2020. We would not have expected a diagnosis after such a long time. And we are grateful that there are people who make an exchange about this genetic defect possible.


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