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Local Family Raises Awareness of Rare Diseases

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Wearing jeans is pretty common. On Rare Disease Day, the Munn family, of Endwell, sported them in an attempt to make rare diseases more commonly known.

This was all done in honor of the youngest Munn, Caleb, and his battle with a rare liver disease.

At first glance, Caleb Munn is your typical 17-month-old boy. However, when he was just months old, Caleb was diagnosed with Biliary Atresia, a rare disease that was causing his liver to fail rapidly.

"One in 18,000 to 20,000 kids are born with it a year, and that's about 300 kids in the United States," said Brittany Munn, Caleb's mother.

One year after receiving a life-saving liver from donation his father, Caleb is able to do what he loves best... explore.

"We're very blessed at how well he's speaking, how well he's moving around," said Munn, "We're just happy to see him out of a hospital bed."

A new focus on rare diseases may have made the difference between life and death for little Caleb.

"If we didn't have the medical advances that we do today, our son's diagnosis would have meant that he would have died by the age of two," said Munn.

Munn urges all parents to look for answers from their medical providers, even if those answers don't come quickly, nor easily. She says if it wasn't for persistence, they may not have discovered Caleb's rare disease.

"Push for answers," said Munn, "If a doctor pats you on your head, and tells you everything is fine, go find another doctor and get a second opinion."

A second opinion that means the world to the Munn family.

You can find out more about "Caleb's Journey" on this Facebook Page.