Nearly every day since late October, Joshua Volz wakes up in a hospital room in Charlotte beside his 3-year-old daughter, Sofia, waiting for the call that could save her life.
Sofia Volz was born with a rare and severe congenital heart defect known as hypoplastic left heart syndrome. Since Oct. 29, 2025, she has been an inpatient at Levine Children’s Hospital while doctors search for a donor heart for a transplant.
Her father explained that the wait has already stretched into months.
“We’re just waiting on a miracle,” Joshua said. The Volz family’s intense love for Sofia was made evident in every word spoken by Joshua.
Despite her condition, Sofia’s personality shines through. Sofia, who will turn 4 in May, is known to her family as a joyful and determined child who loves Christmas and adores her younger brother, who Joshua describes as “her whole world.”
Her oxygen levels typically sit between 75% and 85%, far below the normal range of about 97% to 100%. With medication and constant medical care, she remains active and spirited.
“If you saw her out in public, you probably wouldn’t even know anything was wrong,” Volz said. “She’s full of life, full of joy; if she weren’t on medication, she probably would be bedridden, but there are brilliant people keeping her happy and comfortable.”
Sofia doesn’t let her condition define her: she’s still vivacious with a bright personality.
Congenital heart defects are among the most common birth defects, affecting about one in 100 babies. Sofia’s case, however, is among the most severe.
Doctors first discovered something was wrong during a prenatal test in 2021 while Volz and his wife were still living at Fort Bragg, as Joshua was a member of the Army at the time. The couple had paid out of pocket for an ultrasound and blood test during the COVID-19 pandemic when routine military medical services were limited.
“They immediately told us something was wrong,” Volz said.
Further testing confirmed the diagnosis. Doctors told the couple their daughter would need major heart surgery shortly after birth and warned that survival was far from certain.
Sofia was born on May 16, 2022, and underwent her first open-heart surgery within 36 hours.
She later underwent a second surgery at Duke University Hospital. The third operation typically performed for children with the condition—known as the Fontan procedure—is not an option for Sofia because doctors believe she would not survive it.
Instead, she developed heart failure and was placed on the transplant list.
Her blood type, O-positive, also lengthens the wait. Patients with that blood type can receive only certain compatible donor organs, which often extends transplant timelines.
Joshua, a military veteran, left service shortly before Sofia’s heart failure worsened so that he could remain by Sofia’s side during her stay in Charlotte. His wife works as a neonatal intensive care unit nurse at FirstHealth Moore Regional Hospital. The couple moved to Seven Lakes about a year and a half ago and also have a toddler son who will soon turn 2.
Because Sofia must remain hospitalized, the family has been split between home and Charlotte. Volz stays at the hospital with his daughter while his wife continues working and caring for their son.
“I couldn’t be at two places at once,” he said, regarding his choice to stay with Sofia.
When Sofia’s care allows, the family stays at the nearby Ronald McDonald House Charities, which provides lodging for families of hospitalized children. The Charlotte house on East Morehead Street has hosted them for more than 100 nights.
Volz said the organization’s volunteers and staff have been a lifeline.
“It’s a great place,” he said. “They’ve been phenomenal.”
The family expected the transplant process would be difficult, but did not anticipate such a long hospital stay. They sold equity in their home and are relying largely on savings while Joshua remains with Sofia full-time.
Through it all, he said, they try to focus on hope.
Volz recently created a Facebook page to share Sofia’s journey and raise awareness about congenital heart defects, hoping other families facing similar diagnoses will feel less alone.
“We’re kind of navigating this blindly,” he said. “We just want to share her story so other people know there’s hope. She’s such a strong little girl.”
For now, their days revolve around hospital routines, small family visits, and the hope that a donor heart will arrive in time.
“We just want people to know her story,” Volz said. “And to keep her in their prayers.”
The Volz family has an official fundraiser for Sofia established through the Children’s Organ Transplant Association (COTA). Joshua said that any donation is greatly appreciated and that all funds raised through COTA will go directly toward lifetime transplant-related expenses, helping make sure Sofia receives the care and support she needs both now and in the years ahead.
If you would like to brighten Sofia’s day by sending her mail, Joshua said mail can be sent to the Ronald McDonald House at 1613 East Morehead Street, Charlotte, N.C. 28207, addressed to the Volz family.
Photos courtesy the Volz family.
Abegail Murphy | Assistant Editor
Written by Sandhills Sentinel assistant editor Abegail Murphy. Abegail has been writing for Sandhills Sentinel since 2021.
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