Daughter's legacy: Raising awareness of CMV

TAMPA (FOX 13) - John Spytek spends his days around a lot of tough people.  He's the director of player personnel for the Tampa Bay Buccaneers.  But the toughest person he ever met is not in this crowd.  It's his 21-month-old daughter, Evelyn.

"I think Evelyn did more in 21 months than anybody I met or hope to meet," John said. "I think she touched so many people."

Evelyn was born with congenital CMV, weighing only 3 pounds, 14 ounces. CMV is a viral infection affecting one in every 150 babies born each year, which makes it the most common congenital viral infection in the U.S., even though many people have never heard about it.

While most of the babies born with CMV have no symptoms or long-term issues, roughly 5,000 babies do have problems, most commonly hearing loss.

Little Evelyn suffered from a host of problems -- vision and hearing loss, microcephaly -- but she was a fighter.

"She was wonderful, she lit up a room, she was absolutely amazing," said Kristen Spytek, Evelyn's mom. "She taught us so much: To persevere, patience. She was literally fighting a battle every day on doing things that we take for granted."

Evelyn's mom Kristen and her dad John are in awe everyday of Evelyn's toughness. As sick as she was, she rarely cried.

"She laughed a lot, she smiled a lot, and she was tough.  She dealt with a lot of things people in this life don't have to deal with -- and she did it every day with a lot of grace," John added.

Sadly, Evelyn passed away in December of 2014, after a needed surgery. Her parents have now dedicated their lives to making people aware of the disease that took her life.

"We just really want to make sure that the people who are thinking about becoming parents are asking the right questions in the doctor's office and having that two-way dialogue about this as a potential just to make sure they are thinking it through and preventing the virus as much as they possibly can," Kristen said.

For Kristin and John and their baby boy Jack, it's all about keeping Evelyn's spirit alive the same way she lived her life.  The Spyteks started the National CMV Foundation two years ago.

June is National CMV Awareness Month.

LINK: http://www.nationalcmv.org