Gage Spurlock has played some exciting roles in his life. The 10-year-old has been named honorary sheriff of his county, advocated for children with medical complexity on Capitol Hill and helped break the news via social media that television and home improvement celebrities Chip and Joanna Gaines were having a baby boy. Recently, Gage was the star in his grandparent's home—he pulled himself on to stairs. Before Gage was born, doctors were unsure if he would survive birth, let alone try to walk.
At 20 weeks into the pregnancy, parents Kim and Mike went into their scheduled exam expecting to find out the gender of their baby. They had three older children, so the exam seemed familiar. It was Kim who first noticed the doctor was spending a lot of time going back and forth measuring bones.
The measurements she collected were expected at eight weeks of pregnancy—not 20. She sent the Spurlocks to a specialist. "At this appointment they did a lot of measurements again," Mike says. "They said his face was going to be OK but told us, "Your son is not going to be very tall." We were kind of relieved."
By the next appointment, a sonogram showed fractures in his ribs, arms and legs. Amniocentesis confirmed the osteogenesis imperfecta diagnosis, known also as brittle bone disease. Doctors told the Spurlocks if Gage survived until delivery he may not live because his rib cage could collapse, and he wouldn't be able to support his lungs.
Crying is good
Kim accepted the diagnosis with the determination to learn everything she could about the condition. When Gage was born, he produced a loud cry. "I was relieved when I heard that cry," Kim says. "Because of my research I knew a loud cry was a good sign." Gage spent the first 11 days in the NICU at Wolfson Children's Hospital in Jacksonville, Florida.
His parents say his first year, Gage never got sick and didn't have any fractures. Shortly after his first birthday, he was diagnosed with hydrocephalus and required a shunt in his head. Two weeks later he contracted double pneumonia. "That was when our journey changed," Mike says.
Most of the next eight months Gage and his parents were in Wolfson Children's PICU. Breathing became difficult for Gage. "Sometimes he would just tire out," Mike says. "The doctor described Gage's breathing as constantly being in a sprint." As much as Mike and Kim wanted to avoid a tracheostomy for their son, his illness was causing more harm to his bone structure—putting his life in danger.
Gage was able to stay at home for a long period after getting the tracheostomy and using a ventilator for 24 hours a day. Kim says going anywhere was like traveling with a mini hospital. They made the transition home with no outside caretakers because hospital staff helped Kim learn as much as she could to care for Gage.
Nine years later, Gage requires a ventilator only at night. He goes to school where his mom continues her role as caretaker and helps in class as needed. He enjoys playing video games with other kids, singing on the karaoke machine and is a big fan of WWE wrestlers. Gage is getting stronger. He has had infusions to strengthen his bones and surgeries to insert rods into his femurs.
Enduring the infusions and surgeries was getting Gage closer to his goal of walking. However, the COVID-19 pandemic disrupted services at children's hospitals and that also affected Gage. He was excited about his first physical therapy session following surgery, but it had to be postponed. Once quarantine restrictions eased, Gage started therapy. The little boy who fought so hard to breathe is climbing stairs with his mind set on walking.