Rare Reality

We remain registered with Simons Searchlight (originally named Simons VIP Connect) since 2014. (who we found out about through Unique)They are international researchers who study “conditions that can be extremely rare”.

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:

Diagnosis: The Journey Ahead Part One

To understand where I need to go, I must first look at where I have been. Let's start from the beginning…. My son was born weighing 9lb 1 ounce. He was even an early walker at 9 months. The only concern at the time was his inability to sleep.

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