Today I met with someone from The New Zealand Organisation for Rare Disorders, NZORD, to talk about Rare Disease Day in February next year. Rare Disease Day is an annual day at the end of February that is celebrated internationally.
NZORD is a space for patients, family, friends, clinicians and researchers in the rare disease community as well as the common disease community. They provide support, resources, advocacy and engage in policy matters that affect the health of all New Zealanders.
For the last few years NZORD has run a cocktail event on Rare Disease Day to raise money and awareness, and celebrate those in our lives with rare disorders. Each year they have a guest speaker at this event, and next year that will be me.
While the thought of speaking about Eva and my journey in front of a room full of people I’ve never met does send a ripple of panic through my stomach, it also sends a wave of pride. Pride in what I’m doing with the podcast. Pride in Eva and where she has taken me. Pride in the fact that someone in the Rare Disorder community knew who I was and thought I’d be a good voice for their event.
If you’d told me three years ago that I would be speaking at a Rare Disease Day event, I would never have believed you. My life has changed so much because of Eva. Any fear or nervousness I feel about public speaking is drowned out by the memory of her making me strong. Her memory is telling me that it’s so important to share our stories, even when it’s hard. Because those of us who are parents of rare children know what it’s like to have your life turn upside down in all the most terrifying and beautiful ways. We know what it’s like to feel like your life is no longer something you recognise.
In order for this new knowledge to be a little less terrifying, in order for these diagnoses to be less isolating, we need to share our journeys and create understanding and acceptance, not just in the rare disease community but in all our communities. We need our experiences to be common knowledge. We need our stories to be heard and understood. Because without empathy and understanding, we will stay isolated. If we want change, if we want Education Ministers to take special education policy seriously, we need to raise our voice and make sure we are heard. I’m looking forward to sharing my voice, and Eva’s, in a new way next year.