Tucker Jordan’s love of outdoor adventure is not unusual for a young boy. What he has to get through to enjoy the outdoors is.
When he wakes up in the morning, he takes two inhalers and receives physical therapy on his chest to clear the mucus that pools in his lungs. Going shopping at Walmart or some other public place can require a face mask to keep out the germs. Three-year-old Tucker has already endured a steady stream of ear infections, pneumonia and sinus infections. He has had ear tubes put in, tonsils taken out, adenoids removed, and he has endured bronchoscopies, a lung biopsy, PICC lines, and the insertion of a permanent port for IVs. Primary ciliary dyskinesia, a rare genetic lung disorder, doesn’t make things easy for a kid.
Members of the Wake Forest community, though, want to make things a little easier for him. Special Spaces of the Triangle, the local chapter of a national charity that does bedroom makeovers for children with life-threatening diseases, designed and installed a brand new bedroom Saturday for Tucker. The rustic hunting and fishing theme, which Tucker picked out, entailed treating the walls with a log cabin finish, painting a forest scene mural on one wall, and bringing in pine cabin beds. There are even some cabin roof canopies extending over the beds to complete the immersive feeling.
When parents have so much on their plates providing for their child’s medical needs, there isn’t much time left over to create a peaceful environment to sleep in, said Katie Martin, director of the local Special Spaces. That’s where the volunteers come in.
“We transform very plain, drab areas into a place of imagination and peacefulness and excitement,” she said.
Tucker enjoys family trips out to Kerr Lake for fishing, and he looks up to his father, Scotty, who is an avid hunter. Tucker has been better able to enjoy these trips after his diagnosis with the rare genetic disease, which came just before he turned 2 years old. PCD impairs the functioning of cilia, the tiny hair-like structures that coat the outside of cells. Cilia typically move mucus and bacteria, so when they don’t do that, infections set in, especially in Tucker’s respiratory system.
Now Tucker is settled into a routine of treatment, his mother, Meghan Jordan, said. Every three weeks he receives intravenous immunoglobulin treatment, which she said requires him to sit in a chair with an IV for five to seven hours, similar to chemotherapy.
With medicine playing such a major role in her son’s life, Meghan wants Tucker’s new room to serve as a place of refuge.
“My goal is to make that just a fun room that he loves and do nothing medical in there at all,” she said. “This’ll be just Tucker’s escape.”
Special Spaces’ contribution goes beyond Tucker’s bedroom. The group raises about $3,000 for each room it donates, but it tries to help with other aspects, too, Martin said. This time around, the Crabtree Valley Marriott in Raleigh donated the family a night in a spacious two-bedroom suite so Special Spaces could arrange a carpet cleaning for the house the night before the bedroom’s big unveiling. Volunteers prepared a week’s worth of meals to stock the family’s refrigerator. The bedroom also comes with a new laptop for the Tucker and his three older siblings.
The installation takes a full day. About 25 people are involved with painting and redecorating the room from 8:30 a.m. through the evening. Different people bring different skills, like electricians, general contractors and painters, Martin said. For Martin, the work has a personal dimension: She almost died from a rare blood kidney disease when she was 16, and she saw firsthand how gloomy hospitals can be for kids just trying to get better.
For his part, Tucker finds ways to make treatment more enjoyable. He has picked out a favorite chair and has made friends with the nurses, which makes things easier, his mother said. She added that his example has taught her a lot about making the most of every day.
“He gets up in the morning and has to have so much medication and chest PT and have his port accessed every three weeks … (but) he’s just happy and makes the best of everything,” Meghan said.