Samuel’s mother has shared their journey in Italy. The English translation is below. The original Italian version follows. We are grateful to our community who submitted stories leading up to Rare Disease Day. To date, one family has been diagnosed with Okur-Chung Neurodevelopmental Syndrome in Italy. Please read this raw, emotional and honest piece...
Continue readingA Piece of a Life’s Journey
Arthur’s mother has shared her story from France. Below is an English translation. The original French version follows. Since the day Arthur was born I felt he was in pain and that something was wrong. We already had a two-year-old daughter when he was born. My baby was in pain. He cried a lot...
Continue readingAn OCNDS Parent’s Experience at an Intensive Therapy Program at the Star Institute for Sensory Processing
By Keri Ninness As we began to really prepare for Thomas to go to Public school for kindergarten, we asked his therapists where they saw his biggest areas of need. We then assessed where in our home his functioning was most impaired. While Thomas doesn’t have a full on Sensory Processing Disorder diagnosis, he...
Continue readingReflections From an OCNDS Parent on Their Family’s Journey to Diagnosis
By Rhiannon Cramer I wanted to take a moment to say how thankful I am for the OCNDS community and to tell a little of our story and journey. Our daughter’s problems were evident by the second week of her life. This turned our lives into a journey that has been a long difficult...
Continue reading