Stories
Shared experiences
Shared experiences
Diana about her daughter Natalya
Natalya Rose was born on April 10, 2009 . We got the diagnosis of PHIP related disorder / Chung-Jansen syndrome just a few years ago. Natalya has struggled her whole life having different kinds of psychological and physical problems.
Christy about her daughter Eleonor
Christy Leiter talks and writes about her daughter Eleonor who has Chung-Jansen syndrome on her instagram account and youtube channel
Jordan about himself
Jordan Smelley has Chung-Jansen syndroom and uses his life experiences to help others as a peer support.
Sandra About Her Son Joshua
Joshua is 14 years old now and has been diagnosed with Chung-Jansen syndrome. He is adopted and we are in very close contact with his biological parents. Joshua’s mother also has the same syndrome.