5 years ago, and after years of worrying and searching and shuffling from new school to promising specialist, our son, Iggy was finally diagnosed with a rare genetic disease and life long neurological condition called, Trip 12. With only a handful of other cases in the world and almost all of them still children, we had literally no information as to what this meant for his care or life. We now had a word, followed by a number; a list of other conditions he could possibly have or develop; another list of basic things he probably couldn’t ever do; as well as, a lot of unanswerable questions.
Through this process, we’ve learned a lot about Iggy, but mainly about ourselves. We decided to stop searching for answers and someone to tell us he was going to be ‘ok’, and started accepting we had them and that he was. We stopped hoping that Iggy was going to become someone else and we started really seeing him for the extraordinary person he is.
A Different Story is about doing exactly that – telling a different kind of story than that one word, followed by a number, told us. A story that’s rooted in celebrating Iggy for who he is and what he brings - not in spite of his difference, but because of it. A Different Story is also about telling, supporting and impacting the story and lives of others around the world like Iggy, who live with disabilities, rare diseases and are also vulnerable.