LE MARS, Iowa (KTIV) -
A Siouxland family is hoping to raise awareness about a very rare disease that took the life of their infant daughter. And in the process they're keeping her memory alive.
Macie Kate Majeres was born on February 15th, 2007. A beautiful baby with big blue eyes, and one thing missing. "She had some skin missing on her index finger, and then she had a few blisters on her bottom," said Katie Majeres. Mom, Katie and Dad, John didn't think much of it. Macie otherwise seemed fine. But doctors worried, and immediately sent Macie to the Mayo Clinic for testing. Within days Macie developed more blisters, and Katie and John heard the term Epidermolysis Bullosa for the first time. "Friction, and any kind of rubbing with a blanket. Heat, if she got too warm then that would cause blistering," said Katie. Infants with E.B. are often called "Butterfly Babies," because their skin is as fragile as the wings of a butterfly. "We had to adapt and change everything we did," said Katie.
At first, doctors told Katie and John that Macie could live with the disease, and may even outgrow it. The family did all they could to help her, and even made sure they enjoyed time together, going on bike rides. But in July, they met a member of a Epidermolysis Bullosa support group. "She showed us pictures of her little baby Lauren. And once we saw pictures of Lauren, we knew she was just like Macie," said Katie. "I just got a look, and I didn't want to show her the look. But when I looked up at her she had the same look on her face. We just knew that she was misdiagnosed," said John Majeres. There are seven different types of E.B. and Macie didn't have the kind you outgrow, she had the kind that takes your life before age one. Macie soon developed blisters inside her body, and started having trouble breathing. She lived exactly six months, and died on August 15th, 2007. Now the entire Majeres family, is left with memories of a life cut way too short. "Her smile, and how tough she was. Just her big blue eyes, looking up at me holding my hand," said Katie.
Epidermolysis Bullosa is a genetic disease. About 50% of the population carries it, but both parents must pass it to the child. The chances of two parents carrying the disease and passing it along are less than 1%. To help raise awareness and money for the E.B. support group, the Majeres family has organized a 5K Run/Walk. It's planned for this Saturday, August 11th at Kluckhohn Elementary in Le Mars, Iowa. Registration is at 8:30 with the run starting at 9. There will also be a silent auction to benefit the E.B. support and research group.
