Read a feature story on this family’s care, published by the Honolulu Star-Advertiser, by clicking here.
(Stanford, Calif.) — There’s one thing that 8-year-old Dominic Faisca of Hawi, Hawaii, has always wanted to be: taller.
At only 3 feet, 4 inches tall, his growth has been thwarted by cystinosis, a rare and deadly genetic disease in which an amino acid – cystine – builds up and forms crystals in the kidneys, the cornea of the eye and other places in the body. In the kidneys, these crystals disrupt and damage the organs, depriving young bodies of the nutrients they need to grow and sometimes leading to renal failure.
But now, with the new donor kidney he received at Lucile Packard Children’s Hospital Stanford a few days shy of his birthday this past June, Dominic is working on that height thing again.
Only about 800 people in this country have the disease, said Paul Grimm, MD, medical director of the pediatric kidney transplant program at Lucile Packard Children’s Hospital Stanford, the highest-ranking kidney transplant program for children on the West Coast. In this “recessive” disease, children have to inherit two copies of a faulty gene before cystinosis occurs. As long as there’s one normal gene, there’s no problem. But when both parents carry a faulty gene (in this case, unknowingly), each child has a 25 percent chance of developing the disease, explained Grimm, who is also a professor of pediatric nephrology at the Stanford University School of Medicine.
The Faisca family was already braced for the possibility of cystinosis in Dominic. That’s because his older sister, Julia, now almost 10, was diagnosed with the disease at 8 months of age. Over the years, doctors carefully monitored the two siblings through Stanford Medicine Children’s Health outreach programs in Honolulu, close to the Faiscas’ home. That outreach is part of a network of care that has partnerships and collaborations at more than 100 locations in eight states throughout the U.S. western region.
Care teams used medication and nutritional support to keep the Faisca kids’ kidneys functioning for as long as possible before the youngsters were placed on the transplant list.
But at some point in the course of the disease, the accumulated cystine crystals irreparably damage the kidneys. So, when monitoring tests showed that both of Julia’s kidneys were failing, she was placed on the active transplant waiting list in May 2013. Three months later, a successful transplant surgery led by Waldo Concepcion, MD, professor of multi-organ transplantation at the Stanford School of Medicine, gave her a new donor kidney to replace her two ailing kidneys. Thanks to the healthy kidney, she’s recently added 7 inches to her petite frame.
Next up was Dominic. Although his name went on the active waiting list for transplant this past April, the timing of his transplant was a surprise. The Faisca family was already on a plane headed to Stanford for Julia’s routine, 100-day post-transplant kidney biopsy. During that trip, Dominic was slated to start dialysis for more-intensive kidney support. But their plans changed as soon as they landed in San Jose: a call came that a donor organ was available. Again, it was Concepcion leading the successful surgery.
“We’ve been busy: two kidney transplants in less than a year,” said the kids’ mom, Natasha. The family draws support from their tight-knit community on the Big Island. But she also relies on the community and care teams at Lucile Packard Children’s Hospital and Stanford Medicine Children’s Health, and the ongoing nephrology care back home.
“Everyone in our office is thrilled that Dominic and Julia were able to receive donor kidneys,” said James Musgrave, MD, the kids’ pediatric nephrologist in Honolulu. “They’re a wonderful family and they’ve been through a lot, and they’re living proof that organ donation saves lives.
Mom Natasha is thankful. “Dr. Musgrave at home and the doctors at Stanford have gone above and beyond anything you would ever imagine. Everything they do lets you know that it’s all about the kids,” said Natasha, who expressed gratitude for the gift of organ donation. “And we’ve found it wonderful to be able to meet other families that are enduring the same things.”
After spending their summer vacation visiting all-things Stanford, Dominic and Julia are back in Hawaii now and showing off their growing selves to friends at school.
“Since their transplants they aren’t picky eaters anymore,” Natasha said. “I joke with the doctors that the kids are eating me out of the house now. But it’s well worth it!”
Although they’ll always be on medication to protect their new kidneys and will need to return for twice-yearly checkups at Stanford, there’s finally a sparkle in their eyes, Mom said.
“Dominic and Julia are growing like weeds,” Grimm said, “and it’s really fun to watch them turn into regular kids.”
Discover more about our kidney transplant program or call (650) 498-5480.
