ELDERSBURG, Md. (WUSA) -- Steve and Maryanne Danko of Carroll county take joy in describing the personality of their son, Mikey. They say his carefree smile and laughter are his most common expressions.
Steve Danko says, "It's so amazing how much happiness he brings to the people who get to know him."
Mikey is 14 years old, he is one of the longest survivors of trisomy 18. Trisomy 18 was brought into the national spotlight after Senator Rick Santorum announced he was dropping out of the Republican presidential nomination race. Santorum's daughter, Bella, was suffering due to complications from Trisomy 18.
Only 10 percent of children born with this chromosomal disorder live past their first birthdays. There are typically major developmental delays, heart defects, and malformations of the hands and feet. One of the biggest risks early on is pneumonia, kids with trisomy 18 easily aspirate fluids or food into their lungs. That's what put Bella Santorum into the hospital, and kept the Danko family on edge in Mikey's early years.
Steve Danko says, "The pneumonia was a constant worry. I mean, you're never sure whether or not in the morning you're gonna get up and you're gonna hear something in his lungs."
Maryanne Danko says, "I remember early on when the doctors would say you've got an appointment six months from now and I thought 'well, we'll see.' You know, it was hard to kind of think six months from now because we were given such a bleak outlook."
Mikey is tube-fed to limit the risk of pneumonia. He gets home-schooling and therapy and is loved by friends, neighbors, and parishioners at church. But the founder of a Virginia organization called, The Trisomy 18 Foundation, says the Danko's experience is very unique. Victoria Miller says miscarriage, stillbirth, and early death are so common, some families are making funeral arrangements during pregnancy.
Miller says, "A lot of children with trisomy 18 are hidden. There are a lot who are conceived who we never get to meet. So the vast number of families that are impacted are not walking around the street for people to see."
Miller says since the Santorum family's announcement, there's been more traffic on the organization's website than in its entire history. The Danko family is ready to reach out to other families struggling with this disorder, to let them know that kids like Mikey exist.
Maryanne Danko says, "We are in the process right now of planning our vacation for the summer, taking the kids to the beach.."
She adds, "Mikey, he's so smiley! I mean, it's a challenge and all, but its worth it."
To donate to the Trisomy 18 Foundation please click the link below: