You Never Stop Being Rare

I’ve always enjoyed being a tad unique, marching to the beat of a different drum, channeling my inner Heather.

Today is Rare Disease Day- a globally-coordinated movement focused on rare diseases and the 300 million people impacted globally by these conditions. As much as I’ve liked being my unique person, I wish I didn’t know as much as I know about this day. I wish my genetic makeup, my genomic sequence wasn’t quite so rare.

I wish I didn’t know that 35% of deaths within the first year of life are attributed to a rare disease. I wish I didn’t know the inequality within healthcare, access to care, therapies and social opportunities for those impacted by rare disease.

But I do.

And you can’t change what your life is. We, as a family have become closer by what makes us rare. Our POLG-1 deviation has made us vulnerable, perhaps a tad sweeter to each other, super protective, a village and a tribe.

Would we be different if we were not rare? I don’t know. We can imagine what life would be like without mitochondrial disease but it’s not reality. Reality is our Rare.

And along Rare, you meet the most amazing people. People who fight for your cause just because they love you. People who work tirelessly for a cure. People who wake up everyday with extraordinary hurdles- either those impacted or the caregivers who love them.

Would I trade a Rare Life? Heck yeah. I would love two lippy, stinky teenagers. I would love to have my brother school me on the moguls. Rare is not glamorous. Rare is hard and heartbreaking.

And yet Rare is beautiful and bonding. Rare is raw strength.

Above it all, Rare is who we are. You never stop being Rare. The best we can do is own it, be it, and help other recognize Rare in the world. Happy Rare Disease Day.

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