Rare Disease Day!

It’s Rare Disease Day, and what better day than celebrating it on February 29th, a day that only comes around every four years?!

To my friends and family, thank you for being you and supporting me through this wild journey. I hope one day we find a name for our disease and can have a plan for it down the road.

To my friends in the rare disease community, we got this, and I am forever grateful I found humans going through the same but different things. It is good to have people who understand what being rare and undiagnosed is like. We are just one of a kind, and that’s OKAY.

Research and continued advancements in science play a heavy role in my family's lives and other individuals living with rare diseases and conditions.

Celebrate and embrace your uniqueness on Rare Disease Day!