A Monroe family is getting the word out about a rare disease that took their most precious gift - their daughter.

Sophia Ramsey was 13 months old when she died from a genetic disorder that causes blisters and erosion of the skin. She was diagnosed with junctional epidermolysis bullosa at just 3 weeks old.

It left Sophia with scabs and pain.

Dr. Richard Antaya, from the Yale School of Medicine, treated Sophia and says one in 20,000 people in the U.S. have EB.

Doctors say a protein is missing to keep the skin together, and any membrane just falls apart. Eventually, the blistering becomes internal.

"She actually she had one of the most severe kinds with the shortest life expectancy," says her mother, Katie Ramsey. "That was tough to hear but we didn't really get that final diagnosis until she was about a little over 3 months old."

Ramsey and her husband started a website called Sophia's Hope to raise awareness and raise money to find a cure.

They have helped to raise money for 4-year-old Elodie Kubik, from Greenwich, who was born with a very similar condition.