When they boarded a flight to Hawaii, Nancie and Bill had no idea their 12-year-old daughter was days away from being diagnosed with end-stage renal disease (ESRD). It was spring break and everyone was excited for the family adventure to begin.
The day before the trip, Bella saw a local orthopedic specialist after feeling pain and weakness in her legs. She otherwise felt well, but with softball season approaching, she didn’t want to risk injury. The specialist drew blood and was hoping to have some answers for the family upon their return home to Connecticut.
End-stage renal disease: A devastating diagnosis
Just hours after landing in Hawaii, orthopedic specialist Dr. Daniel Green of New York’s Hospital for Special Surgery called. Bella’s leg pain was not just an orthopedic issue — it was due to bone disease brought on by kidney failure.
Grateful for Green’s perseverance, Nancie and Bill were in shock. How could their healthy, active daughter be so sick? The remainder of spring break was emotional as they “cleared the decks” to be able to fully focus on Bella’s health.
Back home, doctors confirmed the diagnosis and felt Bella would need a kidney transplant. “I had never had surgery before, so for me there was a fear of the unknown,” she remembers. “But I knew I had to deal with it, and it was comforting to know I’d get better after surgery.”
New England natives, Nancie and Bill immediately made an appointment to get a second opinion from the late Nephrologist-in-Chief at Boston Children’s Hospital, Dr. William Harmon. Bella wore bright yellow sneakers to the appointment, to which Harmon remarked, “I bet you won’t get lost in the snow wearing those!” Bella cracked a smile, and relaxed — Harmon had earned her trust.
Given her severe kidney disease, Bella began medications to optimize her health prior to transplantation. Over the next several months, she was back and forth to Boston for evaluations by various members of her care team.
“The entire family took on these added responsibilities with grace,” says Dr. Nancy Rodig, Medical Director of the Kidney Transplant Program at Boston Children’s. “They came to kidney clinic with a positive attitude and questions, to ensure they understood as much as possible about Bella’s condition.”
A father’s gift
Bella had stabilized by July and was cleared to receive a kidney transplant from a very special living donor — her dad. “We were unusually lucky that not only was Bill a match, but he was also cleared by the surgeons to be a donor,” says Nancie.
Both Bill and Bella underwent surgery on July 24th. The operations went well, but recovery wasn’t easy for Bella. She experienced a kidney obstruction requiring additional surgery and in total spent nearly 30 nights at Boston Children’s.
On top of this initial setback, Bella had to adhere to the rigorous routine required of all transplant recipients: frequent visits to Boston the first few months post transplant, as well as a daily medication regimen with often unpleasant side effects.
By October, she was able to return to school full-time, facing her new reality with incredible optimism.
“Bella bears an unusual weight relative to her healthy peers, including strict compliance with immunosuppression medications and monthly labs,” says Nancie. “Her resilience and grit are remarkable and she is living a full life.”
Now at boarding school, 15-year-old Bella is relishing her newfound independence. As a freshman, she made the varsity ski team, qualifying to compete in the New England Preparatory School Athletic Council (NEPSAC) Slalom and Giant Slalom (GS) events.
“Racing can be dangerous, but I know what I’m doing and I wear a protective vest, so there’s not a huge chance I’ll hurt myself,” she says. “It’s similar to how I felt before my transplant. It was scary, but I knew I would get better. I always try to keep a smile on my face and not let things bother me.”
When Harmon passed away, Bella wrote a note of thanks to him on her yellow sneakers and hung them from a flagpole outside the family’s home in Connecticut. They’re a constant reminder of the many ways she has grown since she fit in those shoes. “I’m back to 100 percent now,” says Bella. “Half the time I forget I’ve even had a transplant.”
Learn more about the Boston Children’s Kidney Transplant Program.