A rare disease called Apert syndrome leaves a young couple praying for a miracle as their infant son, Bryson battles for his life.
Kare carries Brycen and his stroller down a set of steps as they make their way on foot to a doctor’s appointment for Bryan. must drive the family car to work early each morning, leaving Kare to plan around the midday heat as she runs errands around town pushing Brycen along in the stroller.
Aside from Apert syndrome, Brycen also has a cleft palate, severe respiratory problems and holes in the valves of his heart. In addition to regular scheduled trips to the doctor and countless emergency room visits, Bycen has been taken by helicopter to Children’s Hospital in St. Louis, Mo., for treatment three times since birth and has been hospitalized with pneumonia and respiratory syncytial virus six times. He faces at least seven surgeries before age 14, and most need to be done before he turns 5.
Kare prays at the Crossing Church in Quincy, where she was invited by a friend to speak about Brycen to the church’s women’s Bible study group. “The first time I saw Brycen there in the hospital on the day he was born,” Kare said to the group of women, “It was scary how he looked. But in minutes God changed my eyes and all I could see was beauty.”
Four-year-old Quintez helps his brother Brycen with his bottle in the backseat of the family car, as Kare drives around town asking area business owners for help with an upcoming benefit to assist with Brycen’s mounting medical expenses. The family is struggling to keep their used car after it was nearly repossessed when they couldn’t afford to make the payments.
8-month old Bryson rests in the arms of his father Bryan, just days after another serious bout with pneumonia. Both Bryan and Kare were 21 when Brycen was born, and were told by some they were to young to care for a child with special needs. Some suggested they give Brycen up for adoption. They would have none of it. We are doing our damnedest to do it ourselves, Bryan said. That’s OUR baby, and I think we’re doing a heck of a job, a heck of a job. We love him and we’ll be there for him forever.
As Bryan eats dinner after returning home from work, he and Kare discuss financial concerns, while Brycen sits on his mother’s lap. We spend a lot of time talking about who we owe and who we can afford to pay today, Bryan said. Though Bryan works full-time, medical expenses related to Brycen’s care for Apert syndrome have strained the couple’s ability to keep up with their bills.
In the living room at his home, Brycen inhales a fine mist of medication from a tube. His mother is administering one of six daily nebulizer treatments to help battle the constant upper-respiratory infections he suffers from. Apert syndrome affects about one in every 100,000 babies. A child with the condition has a premature fusion of the plates in the skull, restricting brain growth and causing increased pressure in the brain as it grows. The head appears larger than other children’s and the mid-face appears sunken. Apert’s children also have fused fingers and toes, which can be corrected with surgery.
After a typical day of household chores, caring for Brycen and cooking dinner for her family, Kare gives Brycen his nightly bath. It’s getting really stressful, Kare says. It’s hard at times even coming up with diaper money. But I believe in the Lord and felt that He gives special babies to special people, and He won’t give you what you can’t handle.
Kare and Bryan spend time cuddling with Brycen in their bedroom before they turn in for the night. Both parents often comment on how wonderful Brycen is, and how much he has enriched their lives.