Miss St. Francis

My community service initiative, Project Zebra started as a way to honor my dad who had passed from a rare type of cancer. It helps me person to find some support and people who understand rare diseases and how they affect people.

Today, I advocate not just for my father and his death, but now myself. I recently found out that I have a rare disease called Ehler’s Danlos, which means I am hyper mobile, have a sensitive stomach and sensitive skin. Although there is no cure, I am strong and capable of living with this. This isn’t a deadly disease but not all rare disease patients are that lucky. My dad wasn’t as his rare disease took his life.

I will continue advocating for rare disease awareness for my dad, for myself, and for all those who are affected!