Most expectant parents spend the nine months of pregnancy looking forward to many things — the first cry, first steps, first words. Jenica and Andrew Fry of Elkhart just wanted a few moments with their son. Weeks would be better, but as the baby Jenica carried was so very, very ill, they knew that was asking a lot. And though they wanted Kollin Andrew Fry to draw breath, they didn’t want him to suffer. “I don’t want to put him through anything,” Jenica said on Tuesday morning, the same day she had a doctor’s appointment. Jenica had a lingering feeling the news from that appointment might not be good. “It’s just a feeling,” she said. “He’s not moving as much as he used to.” her maternal instincts were correct. “After our OB appointment on Tuesday afternoon, we were told that Kollin no longer had a heartbeat,” Jenica wrote later in an e-mail. “We went to the hospital and had labor induced on Wednesday evening. Kollin was born asleep into Heaven at 1:33 a.m. on Thursday.” The journey the Frys found out via ultrasound on Oct. 31 — at 21 weeks gestation — that their first child was a boy and that the baby had some health problems. Doctors believed Kollin’s intestines were growing outside his abdomen, a defect called omphalocele. At that point, the Frys were more excited that they were having a boy than terrified at the news. Omphalocele after all, is treatable. “We were like ‘Yay, it’s a boy,’” Jenica, a 2000 Goshen High School graduate, said. “Kollin was the one name out of all of them that we could agree on.” Kollin’s middle name is Edward after Andrew’s late father and Jenica’s uncle. that middle name would be prophetic. After more tests and specialists and then a second opinion at Riley Children’s Hospital, the Frys learned Kollin had the chromosomal defect Trisomy 18. the disease is also known as Edward’s Syndrome and occurs when there are three chromosomes in the 18th position instead of the normal two. Trisomy 18 occurs in about one in 3,000 live births. Unlike down syndrome (Trisomy 21), Trisomy 18 is usually fatal, with most of the babies dying before birth. those who do make it to birth typically live only a few days, according to the Trisomy 18 Foundation. however, a small number of babies (10 percent) live at least one year. As with down Syndrome, the severity of symptoms vary considerably. Kollin was on the more severe end of the spectrum. along with the omphalocele, Kollin had a cleft palate and a large hole in his heart. “Every doctor said they were surprised he made it this far,” Jenica said. Living with the news Jenica has a medical background, something that has helped her at times to remain calm and somewhat clinical during Kollin’s diagnosis. She’s an emergency medical technician with Osolo Township fire Department and a medical assistant with Visiting Physicians, though she has been unable to work since Jan. 1. She also worked in a level one trauma center that had a neonatal intensive care unit. “I knew all the weird things that can happen,” Jenica said. As the couple researched Trisomy 18 further after Kollin’s diagnosis, reality set in that this in no way was going to be a normal pregnancy and a happy ending was unlikely. Still, doctors encouraged the couple to act like parents — to read Kollin bedtime stories and treat themselves like mom and dad. “We do that,” Andrew said Tuesday, “but we usually end up crying afterward.” the couple had a photographer take pictures for a baby book and put together a specific birth plan. What they also did that most soon-to-be parents do not, is plan their son’s funeral. but Jenica is a “planner” and that helped her to keep from having a complete breakdown. “I plan and keep planning so I’m not thinking about the other,” Jenica said. “it will catch up to me, but that’s what I do to cope.” the couple realized — though they have received a tremendous amount of support — that it was also difficult for other people to know how to treat them during the pregnancy. Jenica has an outgoing personality and tried to stay optimistic in public. “What else are you going to do?,” she said. “There’s nothing you can do. believe me, I have meltdowns, but I have them in private. And I have good days and bad days. Last night was not a good night.” that was Monday night, the evening before they learned Kollin had passed away. some friends also questioned whether the couple should have put themselves through the eight-month ordeal knowing what the end would be. “some people asked why we didn’t just have the doctors take him,” Jenica said. “they asked why we would go through this — that we shouldn’t have to.” “(Abortion),” Andrew said, “was never an option for us.” Support system one way the Frys shared their pregnancy journey was through Facebook, which became a surprisingly helpful support system. “Through Facebook, I met people that had (Trisomy 18) babies who were stillborn, who lived two hours, two years, 45 days,” Jenica said. Facebook also garnered the couple well-wishes and support from friends from around the country and even around the world. the couple said they have also been blessed with support from many people locally. while Andrew’s employers at Midwest Gun Exchange in Mishawaka have been great about the time off he needed, he doesn’t have health insurance. Friends knew the medical bills would be mounting and they are planning a Pampered Chef kitchen show to benefit the couple Feb. 12 at 1 p.m. at St. Mary’s Catholic Church, 411 W. Vistula St., Bristol. Osolo EMS is sponsoring a bake sale and car wash for donations Feb. 27 from 1 to 4 p.m. There will also be raffles of various items. the EMS station is located at 25600 C.R. 4, Elkhart, between C.R.s 9 and 11. An account for Kollin is also set up at all TCU credit union locations. the plans were all made before Kollin passed away, but the couple plans to be at the benefits “tears and all,” Jenica said. both Andrew and Jenica are very open to talking about Kollin and Trisomy 18. creating an understanding of the disorder and it’s affect on people’s lives was one of the reasons the couple were willing to go public with their story. “Our approach,” Andrew said, “is that if anyone can learn anything from this, that’s great.”