Iggy
“This condition doesn’t define him, you know. It does in many ways but it’s not a definition of sadness, it’s a definition of hope”.
‘Journey of Hope’ is a short film offering a glimpse in to the lives of families where children have received a rare genomic diagnosis. In a world where labels and diagnosis are often framed negatively, this film highlights the reality of both the search for a diagnosis and the impact of the diagnostic moment. Above all else it compels us to think about the power of genetic diagnosis to reframe how we view our relationships, how we understand each other and most significantly, how a different kind of ‘hope’ is possible.
Filming for the ‘Journey of Hope’ took place in November 2019 and involved travelling from our studio in North Wales to Cambridge (UK), Gdansk (Poland) and Amsterdam (Netherlands). The video below is an interview with Iggy’s parents during the making of that film.
“For the first time, I didn’t feel alone in this crazy journey and that things are just as they should be. To be heard, and for Iggy to be seen, was empowering and therapeutic, scary and absolutely our raw truth out there.
I guess when we got the diagnosis, yeah, our journey began. And it began with understanding Iggy more. It began with a lot of appointments, specialists, our diaries became, are still, full of caring for Iggy’s needs which are so complex and it’s a guessing game basically on what he needs. So that journey of completely accepting and letting go, that your life will never be normal with him and accepting that that’s ok and that we’re going to be happy and that Iggy’s clearly happy and I think, yeah, it began the process of accepting what that means.
On my worst days I just feel so angry and sad that he’s not normal and then I feel guilty for those feelings because that’s just who he is. And I get a lot of those days, but more and more, I have days that are about accepting and being really grateful that he is exactly who he is. I think he’s just incredible, and that’s definitely a part of the genetic condition so in a weird way I’m also grateful for it.”
