Category: Family Portraits

“Expect nothing, be happy with what you get.“ Aneta and Kacper are the parents of Emilia (11 years) and Karol (5 years), both children have PCH2a. In their family portrait they talk about a long time of uncertainty at the beginning of their PCH-journey, how they manage life nowadays, what is special about their children and what gives them strength everyday.

“What helped most was the endless love for my children”. Brigitte from Germany is the mother of Leonard and Kilian, both of whom have PCH2. Leonard died in 1995 at the age of nine months. Kilian was born in 1996 and is now 27 years old.

In this interview, Judith talks about her older daughter Lotti, who passed away shortly before her 7th birthday.

„There is a lot of happiness to be found on this journey, but it doesn’t compare to what could/should have been“ In this interview, Anna and Paolo talk about their…

„Finding your own way“ In this interview, pediatrician Nellie from Germany talks about the long journey to her daughter Linn’s diagnosis and her search for a path for her and…

„You can do so much more than you think“ Anna from Germany talks with love about her family’s journey, her son Ole, and her sick daughter Nele. She tells of…

“He Was Blessed With Many Years” Anke Roesch from Germany takes us on her family’s journey with a PCH2 diagnosis. She talks about the years with her son Sebastian -…