Rare is defined as “marked by unusual quality, merit, or appeal : DISTINCTIVE” and trust us, the life of a rare disease can be described as distinctive.
The rare and beautiful wonders of the world capture a sense of peace and awe when viewed.
The face of a rare disease or a young woman working her way through childhood with a rare distinction is heartbreaking.
A relative recently stated this journey as the unimaginable. That would accurately describe the acute pain and uncertainty of these inexplicable lesions and the new limp that Kelsey is just smart enough to conceal from anyone who does not know her well.
Rare is never a word we want to use for our child’s childhood nor our child’s health. Yet, here we are stunted with emotion for the lack of understanding these lesions bring to some of the brightest minds in the world.
Rare is lonely, rare is an emotional drain, and rare feels distinctively raw right now.
Please support our efforts and help us raise funds and awareness at our third annual gala: TICKETS.