In the summer of 2013, Sofia was eighteen-months-old. She was a normal, happy, baby girl living with her parents Ignacio and Erica in Pasadena, California. One day, her parents noticed that she seemed to have lost her appetite. Shortly after, she exhibited cold and flu symptoms, prompting her parents to take her to the doctor to be checked out.
Initially diagnosed with an infection, Sofia was prescribed antibiotics, but the symptoms soon returned. Rushing their daughter to the ER, time stood still as they awaited the results of Sofia’s blood work. Confirming their worst fears, their daughter was diagnosed with juvenile myelomonocytic leukemia (JMML), a rare childhood cancer that usually happens in children younger than two years old. The disease is so rare, Sofia’s doctors said the hospital had not treated anyone with that type of cancer in 15 years.
Facing the unthinkable
While the diagnosis was devastating, there was a glimmer of hope: Her doctors explained that a blood stem cell transplant from a healthy, genetically matched donor could provide a cure. Because the genetic markers used to match patients and donors are inherited, the best chance of finding a match is with a sibling. Sofia was an only child. Like 70 percent of all patients in need of a transplant, her doctors turned to the Be The Match Registry® to search for an unrelated, volunteer donor.
Sofia’s search proved especially challenging. Her ethnic background, Hispanic and Caucasian, contributed to her having a rare genetic type. So rare, there were no fully matched donors on the registry.
The next steps
Her next best option was a series of chemotherapy treatments to get her disease into remission so she could receive a haploidentical transplant from her father, Ignacio. A haploidentical transplant uses blood-forming stem cells donated by a half-matched donor, typically a blood relative, such as a parent to a child or an adult child to a parent. On January 23, 2014, Ignacio donated some of his blood stem cells to Sofia via a bone marrow collection.
For Ignacio, the procedure was not hard. He received anesthesia, so there was no pain. He felt sore the first night after the procedure, but he was able to leave the hospital the next day. He managed the discomfort with an over-the-counter pain reliever. It faded to a dull ache, and he was back to playing soccer five days later.
At first, Sofia also seemed to be responding well to the donation. Her blood counts jumped up and stayed high for several weeks. Ignacio’s blood stem cells appeared to be working.
In mid-February, her cancer cells returned. When one more round of intensive chemotherapy failed, the family was faced with the fact there was nothing more they could do. They took Sofia home in March to live the best life she could. She passed away in June, 2014.
Shining a light
Since her passing, Sofia’s family has committed themselves to raising awareness of the need for more Hispanic people to sign up to donate life-saving blood stem cells.
“Finding a fully matched donor on the registry might have saved my little girl,” said Ignacio. “We’re sharing our family’s story to encourage more Hispanic donors to sign up. I’m asking my community to help honor my daughter’s memory by bringing hope to other families who are still searching for their life-saving match. Helping save another family’s loved one is the greatest gift anyone can give.”
Be The Match® manages the world’s largest and most diverse registry of volunteer blood stem cell donors. Donation is safe, free and confidential.
