rarest of the rare. 

We always knew Jackson would be one in a million. I mean, doesn’t every parent think their child is one of a kind? What we didn’t expect was that Jackson would actually be one in a million – one of very few people ever diagnosed with a genetic syndrome that helps to explain a lot of his birth anomalies. 
Today is world rare disease day, a day I didn’t even know existed until Jackson was born. It’s a day that brings together parents and patients with rare conditions to help raise awareness about these diseases. It doesn’t matter what the diagnosis – today is just about celebrating those who are ‘rare’.

Getting a diagnosis for us wasn’t about treating him any differently. It’s about having access to resources and an understanding of his condition so our doctors can treat him even better. It’s about closure and moving on and opening new doors. It’s about learning who Jackson is and loving him even more because of it. 

Happy World Rare Disease Day, Moose. We love you. 


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