About this Artist
Name
Maria Fernanda Llave
Birth Year
2002
State
Pennsylvania
Rare Disease Affiliation
Spinal Muscular Atrophy Type 2
I was born with Spinal Muscular Atrophy, a rare disease that weakens every muscle in my body—except my voice. My life has been shaped by borders I can’t cross, care I can’t access, and rights I must fight for. Healthcare has always been a battleground. As an immigrant, I’ve seen how language, culture, and access collide to create gaps in care—gaps people like me must bridge alone. This poem is my act of defiance and advocacy. It reclaims the power of my voice—a voice that has spoken at rallies, written to lawmakers, and now reaches into the rare disease community.
Creating this piece wasn’t easy. I rely on others for mobility and daily tasks, so writing is both a physical and emotional effort. But that’s why I write—to show that even when the body is limited, the voice is boundless.
Advocacy is not an extra role—it is my life. I speak for those at the intersection of disability and immigration, whose health is too often compromised by systems never designed for us. My voice has no borders. Through this poem, I hope others find the courage to raise theirs too.
