In many ways, Conor Martin is a typical second grader. He loves playing basketball and fishing with his dad and big brother. His favorite class at school is lunch. He’s remarkable in many ways too. At age two, he learned to dry swallow the pills needed to keep his body from rejecting a donor liver. He is a charmer, who always brings chocolates for his caregivers at UVA Children’s. He’s piloted a plane, and when he grows up, he wants to be a doctor. He can already easily identify blood flow on an abdominal ultrasound image, as he’s needed many in his young life.
Conor has faced many challenges. Soon after his birth, his parents, Julia and Daryl, learned their youngest of three boys had maple syrup urine disease. This genetic condition means his liver couldn’t metabolize protein. It meant he had to have an incredibly restricted diet or risk permanent brain damage. It also meant that catching a cold virus could lead to permanent brain damage. Fortunately, there is a cure for this disease: Getting a new liver.
It was a difficult decision but as soon as Conor reached 20 pounds, Julia and Daryl put him on the liver transplant wait list at UPMC Children’s Hospital of Pittsburgh, a 4-hour drive from their home in Stevens, Pennsylvania. Julia recalls the constant worry she had at the time: “He’s a perfectly normal child but one very simple illness—a cold or ear infection, or him getting into food that he shouldn’t have—could risk him not being able to lead a normal life ... I cannot say how often I had sleepless nights.”
Life-Changing Birthday Gift
Conor was 4 months old when he went on the transplant list, but his parents knew he’d likely have a long wait. Two years later, they learned about a pediatric transplant partnership between UPMC and UVA Children’s so decided to list Conor at both centers. Just a few months later, UVA had a liver waiting for Conor in Charlottesville, an almost 5-hour drive. It was donated by the family of a deceased teenage boy.
Julia remembers the day vividly: “It was my birthday and Conor was staying with my mom because my husband and I went out for breakfast. I went to pick up Conor and my mom said, ‘Conor said he’s getting his liver today.’ I thought, ‘OK Conor.’ But around 1 in the afternoon UVA called and said: ‘We think we have a match.’”
Seeing Conor as a healthy 7-year-old today brings Julia immense joy. “Sitting down with the family for holidays, he can be like everyone else at the table. It’s life changing,” Julia shares. “As a little kid, Conor didn’t understand why he couldn’t eat what everyone else was eating. Dinner time was terrible and it’s so nice to sit down as a family and to be able to enjoy a meal together.”
Two Strangers Become ‘Brothers’
Conor has faced complications after his transplant but one positive experience is becoming the honorary ‘little brother’ of a 65-year-old West Virginia man. Mike Honaker and Conor share a special bond: Conor got 20 percent of the donor liver; Honaker got the rest of the same liver.
On the day of their transplants, Julia introduced herself to Honaker’s family in the waiting room. The families have kept in touch ever since. Honaker remembers first meeting a chubby-cheeked two-year-old Conor. It was just before Honaker left the hospital with his new liver that has given him a chance at a long life after developing an autoimmune disease that ravaged his liver.
“I got to go by Conor’s room and meet him. He was quite shy. I did my Donald Duck impersonation and his eyes got big and he burst out in a smile,” Honaker recalls, adding “I have a picture of me talking to him as Donald Duck. Conor is smiling from ear to ear. My sister had a couple copies of the picture made and I wrote, ‘Big brother, little brother.’”
Honaker has had no complications after his transplant and was sad to see Conor struggle in the first few years. He and members of his church did a video chat prayer session for Conor when he had to be hospitalized. “Some church members laid hands on me to represent Conor to ask for healing.” He's glad to hear from Julia that Conor is doing well. “His mom told me his liver counts have been very good. I’d love to see him have a normal life now ... It probably won’t be too long before Conor will be bigger than me,” Honaker says, “but I’ll always call him my little brother.”
Life after a transplant hasn’t been easy for Conor. Several weeks after his transplant, Conor developed a dangerous bowel blockage. Because of snowy weather, the UVA emergency transport helicopter wasn’t able to fly to Pennsylvania. An ambulance ride would take too long. Conor got a ride to UVA in the plane of a family friend. Conor was too sick to remember the trip so when he was 6 the pilot took him for a ride and let Conor take over the controls. Conor remembers with delight making his brother a bit queasy with some of his maneuvers.
In his young life, Conor has had more trips to the hospital. He has scary memories from needing to be intubated as a baby but has good memories too. The UVA child life specialists have been wonderful, his mom says, and kept him busy, especially during the pandemic. They even helped him build one very messy volcano, his mom laughs.
During his most recent hospital stay, Conor had problems with narrowing of his bile duct, which carries secretions out of the liver. “This is the type of complication that a great transplant center needs to be able to recognize and manage,” says Frank DiPaola, MD, medical director of UVA’s Pediatric Liver Transplant program.
A surgery team, including interventional radiologists and liver experts, did surgery to stretch Conor’s bile duct. The surgery was successful. Conor’s healthcare team is optimistic for his future health. “We expect him to grow up with a healthy transplanted liver,” Dr. DiPaola says.
Private philanthropy has been critically important to supporting these life-saving procedures. Adam Jackson is the President of Blue Ridge Bread and currently sits on the UVA Children's Advisory Board. Adam and his wife, Kelly, have been long time supporters of UVA Children's through their Change for Children program which asks patrons at their 14 Panera Bread Cafes to round up their check to the nearest dollar and the proceeds are donated. To date, they have raised more than $750,000 since 2015 for a variety of projects, and their current project is supporting the Pediatric Liver Transplant services at UVA Children's.
Help transform the future of healthcare by making your gift to UVA Children's or contacting Polly Hunter for more information.