MELROSE -- A Facebook link connected a Minnesota native to one mother's battle to save her son in Louisiana.

Photographer, Christie Zink from Melrose, Minnesota was surfing Facebook late one night when she came across a blog written by Courtney Roth.

Roth is the mother of the well-known toddler Tripp Roth who suffered from a rare skin disorder known as Epidermolysis Bullosa.

This disease affects one in every 50,000 people. Essentially, the skin lacks the right protein to help the skin act as individual layers, resulting in very fragile skin. Zink says the the disease is comparable to a blister that covers your body.

Tripp Roth passed away last January at the age of two. Many children diagnosed with E.B. die within their first year.

His story inspired Zink to use her photography skills to give back to the community. She began taking pictures of Tripp Roth and then others like him. Zink takes pictures of these children to both raise awareness, and preserve their memory.

Zink says she thinks she found Tripp Roth's story for a reason.

She has since started a campaign called the "I Refuse Campaign" and "Little Light." She began by selling t-shirts to raise funds for E.B. patients in need. It has grown into a nation-wide effort to bring awareness to the issue.

Zink was nominated for Yahoo volunteer of the year and has been invited to be the official E.B. photographer.

She's now working on bringing attention to National Rare Disease Day on February 28th.

See below for the video interview with Zink.

CAUTION: Content could be disturbing to some audiences as the video displays graphic images of children with the skin disorder.