Here you can find testimonials from PCH2 families. They will take you with them on a personal journey.
Perhaps you will recognize yourself in one or two of the stories.
Perhaps you can draw inspiration and strength for your life from them, or simply enjoy the feeling that you are not alone and that others are facing or have faced similar challenges.
We would like to thank the participating families for their openness and the insight they have given us.
Share Your Own Story
to support and encourage other families on their journey.
“He won’t be able to play football with you, but he will cheer you on!”
These are the words with which the parents of Tim, now 3 years old, explained the condition of the newborn family member to his two older brothers.
“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.
„A child with PCH2 changes you for the better“ Lisa, the mother of little Max, talks about her journey to a diagnosis and her initial difficulties in feeding Max properly….
„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 -…
