The story of Gracie

When I was six years old I had a grand mal seizure from a cavernous hemangioma in my brain and that is when I was initially diagnosed with this genetic illness. When I was nine my neurologists found one about the size of a quarter in my brain stem that was deemed too risky to take out. A few months later after I turned ten, the cavernous hemangioma ruptured and caused a hemorrhagic stroke in my brain stem that they needed to take out with emergency brain surgery. After being in a coma, I woke up from the surgery completely paralyzed. I was in a rehab hospital for few months but I eventually walked out. I’m still partially paralyzed on my right side and have had 13 surgeries including 3 brain surgeries in total. I have found a passion since becoming disabled to advocate for the rights of this community. I advocate by working with a legal nonprofit fighting for a more accessible world. My illness is chronic and I continue to get MRIs every year to monitor my cavernous hemangiomas.

Gracie’s Story