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At a young age, Daniela Castro tragically lost three of her brothers to Alport syndrome. This genetic condition damages the tiny blood vessels in the kidneys and can lead to kidney disease and kidney failure.
Daniela's doctors urged her mother to have her children examined for the disease. At age 12, Daniela was also diagnosed with Alport syndrome.
For years, Daniela continued with her life as usual and years later, gave birth to a daughter. But just after her daughter’s fourth birthday, Daniela’s blood pressure began to concern her doctors.
Daniela received devastating news: Her kidney disease had progressed. She needed to go on dialysis, a medical treatment that helps the body remove excess fluid and waste products from your blood when the kidneys stop working properly.
While on dialysis, Daniela was also placed on the national transplant waiting list, hoping for a kidney donor. Of the more than 144,000 people on the waitlist in need of an organ transplant, over 91,000 of those individuals need a kidney.
Waiting, with hope, for good health
Daniela was on dialysis for 18 years and faced and numerous hardships. The dialysis treatments, occurring three times a week, kept her alive but consumed her daily routine. She experienced micro heart attacks and tragically lost a second pregnancy due to preeclampsia — a serious condition that can occur in expecting mothers, causing high blood pressure and declining function in organs, including the liver and kidneys.
Due to the various medical complications stemming from Alport syndrome, Daniela’s position on the national transplant waiting list was impacted for a couple of months. Fortunately, her nephrologist and cardiologist were able to identify and address those medical concerns, and she was put back on the waitlist. Her her hopes for a better quality of life were renewed.
One day, the long-awaited phone call finally arrived — there was a possibility of a donor match. The following morning, Daniela arrived at Sharp Memorial Hospital filled with anticipation for her life-changing transplant.
On October 23, 2019, Daniela received her new kidney and a second chance at life.
“I am happy that we were able to successfully perform Daniela’s kidney transplant and have her avoid complications that can occur from remaining on dialysis,” says Dr. Arman Faravardeh, a transplant nephrologist at the Sharp HealthCare Kidney and Pancreas Transplant Program affiliated with Sharp Community Medical Group and Sharp Memorial Hospital. “In addition to improving her overall health, kidney transplantation has also offered Daniela a better quality of life — which I believe is also very important.”
A superhero to the rescue
Daniela knew little about her kidney donor, except that he was a young male. Months after the transplant, she received a letter from the donor's family. When she opened the letter, she was shocked to discover that the person who saved her life was a boy, age 7, named Gavin Raceles.
Daniela was filled with emotions and couldn’t hold back the tears.
Daniela received a photo of Gavin and turned it into a large portrait now hanging in her living room. That same year, she wanted to surprise Gavin's family with presents during Christmas. It was then that the two families first met.
The moment was powerful and emotional, filled with appreciation and connection between the families, Daniela says. She remembers feeling Gavin's presence.
In 2023, just days before Thanksgiving, Lifesharing, a nonprofit organ and tissue donation organization that helps transplant hundreds of vital organs each year, held an event to announce Gavin would be honored during the 135th Rose Parade on New Year’s Day. They also unveiled a floral portrait of him, which was featured on the float.
Daniela, her family and Gavin’s family came together at the event to provide the finishing touches on his portrait.
"Every night before I go to bed, I talk to Gavin, and I form a sign of a heart on my kidney," shares Daniela. "Gavin's mom told me that when asked what he wanted to be when he grew up, he would say he wanted to be the best superhero in the world, and he truly is — he’s my superhero."
Now age 51, Daniela continues to cherish the opportunity to witness her daughter's milestones, made possible by Gavin’s family’s extraordinary generosity. She’s also exploring ways to inspire and uplift others on the transplant waiting list.
Through sharing her story, Daniela hopes to instill hope and resilience in those losing faith during the long and challenging process.
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