Global Rare Chromosome Disorder Awareness Week

Over time, I was in deep thought about what I wanted for my son and what kind of world I wanted him to live in. The conclusion was that I want my son to be able to be himself, and from that, I knew that it was necessary for me to raise awareness about his diagnosis. Allowing others to have a better understanding of his disorder.

Rare Disease Day

Today, 28th February 2019 is Rare Disease Day, a day where people with rare diseases are celebrated as well as raising awareness and improving knowledge of rare diseases.

Diagnosis: The Journey Ahead Part Two

Still coming to terms with the diagnosis, I did the worst thing you could do. I googled the disorder. You know when you pick up a prescription and read the list of side effects and think that you could get all of them? Well, it was exactly like that:

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