Followed by a rolling cart loaded with bags of stuffed animals, dolls, books and more, Jacob and Donyia Sameck easily navigated the familiar hallways of UF Health Shands Children’s Hospital until they reached the Congenital Heart Center on the 10th floor. This was the couple’s second delivery of gifts for the center’s patients, a tradition they had begun as a way to honor the memory of their infant daughter, Harley Jo.
Harley Jo Sameck was born with a rare congenital heart defect called Scimitar syndrome, resulting in an underdeveloped right lung and pulmonary artery. Although Harley Jo’s time at the center was brief, her parents say that the care she received from the doctors and nurses was second to none. To show their appreciation, the Samecks recently made a gift to the center as a way to give back to the health care heroes who’d shown their daughter and their family so much quality care and compassion.
As part of this gift, the couple also chose to honor Harley Jo by naming the hospital room she occupied in her memory. The plaque outside the door reads, UF Health celebrates the life of Harley Jo Sameck and the generosity of Jacob and Donyia Sameck.
When asked what had been so special about their experience, the Samecks described a relationship with Harley Jo’s doctors and care team that was unlike anything they expected or had experienced. From open access to doctors to personal connections with the unit nurses, the Samecks found connections with unit staff which felt as much familial as clinical.
“It was just this feeling like you’re part of the family here,” Jacob said. “I know everybody talks about that idea of family, but it’s a huge deal to be able to come here when your child’s in trouble and actually have it.”
The Samecks were informed about Harley Jo’s diagnosis before she was
born and friends advised the couple to immediately consult with doctors
at UF Health Shands Children’s Hospital. The couple began seeing
Jennifer Co-Vu, M.D., associate professor and director of the Fetal
Cardiac Program at the UF Health Congenital Heart Center. Anticipating
the challenges of Harley Jo’s diagnosis, the couple were also
immediately contacted by the center’s director, Mark S. Bleiweis, M.D.
“The selflessness and generous spirit of the Samecks are what keep me and my team motivated to do everything we can for our patients,” Bleiweis said.
Although Harley Jo’s prognosis indicated a small chance of survival, the Samecks shared that none of that affected how her doctors approached her care. The family was constantly assured by Harley Jo’s doctors that that they would try everything they could. Jacob recalled one instance where a special ventilator was flown in from North Carolina, along with a trained technician, who ensured that the unit’s nurses understood its operation.
“It never felt like our daughter was just another patient or a number,” Donyia shared. “The doctors and nurses we dealt with understood that she was a person and we were her parents. Dr. Bleiweis told us, ‘I’m going to treat your child like I would treat my own child,’ and he did.”
Despite the devastating outcome, the Samecks found comfort in the care Harley Jo experienced.
“This was tragic — it will be hard forever — but we enjoyed our time here,” Donyia said.
“I know that’s a strange concept to explain. It doesn’t sound like those two things could go together, but they very much did because of the compassionate support of the people on the unit who cared for Harley Jo.”
Harley Jo’s memory lives on in the hearts of those who walk those center’s halls. When the Samecks return with their cart of gift deliveries, they are often stopped by nurses who ask, “Are you Harley Jo’s parents?”
“Being able to come back and walk through the hallways … it was two years ago, and they remembered us as her parents,” Donyia said. “It was a nurse we didn’t even recognize, but she recognized us and knew Harley Jo’s story.”
The Samecks continue to support the center through their gift deliveries. And now, they’re committing a new pledge to help with the comfort and care of Congenital Heart Center patients and families.
“It’s truly humbling to us for this family to give back to support our work,” Bleiweis said. “It is a distinct privilege to carry the mission forward in memory of Harley Jo.”