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Dani, 9

Northern Virginia | Services: Nephrology

Getting the Gift of Life

Nine-year-old Daniel ‘Dani’ Jaramillo likes eating pizza, hanging out with his five dogs, playing Minecraft, drawing and folding paper to create origami characters from Star Wars. But unlike other kids his age, Dani has also had two kidney transplants, a liver transplant and his health history analyzed in at least five well-known medical journals. Born by emergency Caesarean section at 35 weeks gestation after doctors discovered autosomal recessive polycystic kidney disease (ARPKD), a rare genetic disorder that causes enlarged kidneys and progressive loss of kidney function, Dani spent the first four months of life in the neonatal intensive care unit at a hospital near his home in Fairfax County and had a kidney removed when he was 17 months old.

“I told the doctors that God had bigger plans and wanted to prove miracles do happen,” Dani’s mom, Pilar, recalled telling physicians after Dani’s January 2005 birth.

When Dani was 18 months old, he received a living donor kidney transplant from his dad, Luis. After two years, Dani rejected the organ and began receiving dialysis to remove waste and excess water from his body. Over the next nearly seven years, Dani continued to receive dialysis in hospitals, which he did not tolerate well, and at home, and in February 2010, received a liver transplant at an out-of-state children’s hospital. Despite his growing list of medical treatments and providers, Dani was not eating or growing well and was often so weak he couldn’t walk.

“Everything Dani has ever done has never been textbook,” said Pilar who speaks of Dani’s case with the knowledge of a medical provider. “He’s never followed protocol.”
Dani with his older sister Alejandra

Road to Richmond

In April 2013, Pilar and Luis decided to transfer Dani’s nephrology (kidney) care to Children’s Hospital of Richmond at VCU (CHoR), where Dani was already being followed by Ronald Williams, MD, Assistant Professor, Pulmonary Medicine. (Children with ARPKD often have immature lungs that cause breathing difficulties.) Soon after meeting Timothy E. Bunchman, MD, Professor and Chief, Division of Nephrology, Dani began home hemodialysis, which allowed him to receive dialysis at home instead of making the three-hour round trip to Richmond three times a week. He also avoided the weakness and other negative side effects he had previously experienced from in-hospital treatment.

“Home hemodialysis is very rare in children,” said Dr. Bunchman, who has written extensively on the subject, “because it is more dangerous and requires intense training for the parents. There are most likely less than 20 kids in the U.S. and mostly all over the age of 15 receiving this treatment. Dani was no doubt the youngest and smallest.”

CHoR’s unique programs and research on high-risk nephrology patients were two reasons Pilar was drawn to Richmond and are two of the reasons CHoR’s Division of Nephrology has twice been listed among the top programs in the country by U.S. News & World Report. CHoR’s Nephrology Team, which includes one part-time and three full-time physicians, a nurse educator, dietitian, social worker and two nurses, has grown over the last three years thanks in part to more than $1.1 million in funding from Children’s Hospital Foundation. Monies have been used to recruit and retain specialists and to fund an ACGME (Accreditation Council for Graduate Medical Education) approved Pediatric Nephrology fellowship program, which began in July 2014.

“Our group works well together,” Dr. Bunchman said. “We review every patient seen each week so everyone on the team has input and uses each other as our own sounding board.”

CHoR’s Nephrology Team, the sole provider of pediatric nephrology services in Central Virginia, offers general and transplant care to patients at CHoR’s MCV Campus as well as through clinics in Fredericksburg, Williamsburg, Prince George and Richmond’s Stony Point area. The team sees more than 2,500 outpatient visits and 1,500 inpatient cases a year and consults with other CHoR sub-specialists including cardiology, urology, and hematology and oncology as needed.

“An Excellent Prognosis”

After Dani’s parents were trained to administer his in-home dialysis during the summer of 2013, Dani also began antibody reduction treatment in preparation for a kidney transplant from his mom. (When Dani’s body rejected his first kidney transplant, his mom donated blood to Dani, which created antibodies that had previously prevented her from donating a kidney.) On August 12, 2013, Dani received a living donor kidney transplant from his mom. She spent three days recovering in the hospital near Dani then remained at her son’s bedside during his week-long stay.

Pilar said she appreciated being close to Dani during and after surgery, something that was possible because of the shared resources of CHoR and VCU Medical Center.

“There are 105 pediatric kidney transplant programs in the country,” said Dr. Bunchman, who also led the teams that completed a unique heart and kidney transplant as well as the first chain transplant (where multiple patients receive transplanted organs) at CHoR in 2013. “Most solid transplant programs share resources between pediatric and adult surgeons to have depth of volume. As with most things, the more you do something, the better you get.”

After being out of school for a year, Dani was able to return to school with his third grade classmates last fall. He no longer receives dialysis, is regaining his appetite and loves playing outside with his friends and older sister, Alejandra. He also enjoys science and has told his mom he wants to be a pediatrician to “help kids.”

“Dani’s prognosis is excellent,” said Dr. Bunchman, who continues to follow Dani through CHoR’s Fredericksburg multi-specialty clinic.

Pilar said the Nephrology team’s creativity in meeting Dani’s medical needs, accessibility whenever she has questions or concerns and ability to include her and Luis in Dani’s care contribute to her satisfaction with CHoR. “They will tell you they are going to do something, and it gets done. Dr. Bunchman understands people as individuals and is the most humble person I’ve ever met.”

Dani’s reasons are a bit simpler. “Dr. Bunchman is funny,” he said.

"I'm a huge fan of team Bunchman," said Pilar, affectionately referring to CHoR's Pediatric Nephrology Team. "When they met me, they understood the urgency of the situation. Now thanks to Dr. Bunchman and his team, Dani gets to participate in life."

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