“Losing is not an option.”
That is the mindset of Sophia, 7, as she battles aplastic anemia, an extremely rare and potentially life-threatening condition in which one’s body stops producing enough new blood cells.
“Her strength and positive attitude amazes me every day,” Sophia’s mother, Michelle said. “I can tell you that she’s stronger than I’ll ever be. She’s just an incredible little girl.”
Unexplained bruising around Sophia’s abdomen and legs developed in the summer of 2014, and prompted her pediatrician to order a blood test which revealed the aplastic anemia.
“At first doctors thought she might have leukemia,” Michelle said. “I think when a lot of people hear ‘anemia’ they don’t think it’s that serious, but [aplastic anemia] is potentially fatal if left untreated.”
A bone marrow transplant is a potential cure, but finding a donor for Sophia has proved unsuccessful. Sophia is half Filipino with a mix of Irish, Spanish and Italian so while Caucasian patients match with a donor approximately 97 percent of the time and Hispanic patients are next at 80 percent, the odds for multiracial are drastically lower.
“With Sophia’s makeup she has only a .5 percent chance to find a match,” Michelle said. “We need to diversify the registry to give those with multiracial backgrounds a better chance.”
As her daughter’s condition grew more severe and finding a bone marrow match far from a certainty, Michelle decided in November of 2015 to temporarily relocate from Crystal Lake to Maryland for Sophia to participate in a groundbreaking clinical trial known as a haplo-cord transplant at the National Institutes of Health. Sophia’s procedure involved doctors combining her mother’s stem cells with donor cells to hopefully create a match.
When doctors first began researching the procedure they estimated a 70 percent survival rate, but the actual results of 92 percent through the first 25 cases have far exceeded expectations. Sophia appears poised to add to that success rate. Despite developing a rare fungal infection resulting in multiple surgeries after the procedure, she is now around 300 days since the transplant.
“She is getting stronger every day, but still isn’t out of the woods yet,” Michelle said. “We’re hoping this is the cure, but she’s still on the bone marrow registry in case a perfect match does come along.”
And Michelle said she is “making it her mission” to at least improve her daughter’s odds. Working with Vitalant staff, Michelle has held several bone marrow and blood drives, including some in areas of heavy Filipino population. She has also taken to social media to encourage people to join the registry.
“It has become my passion to spread the word about the registry,” Michelle said. “I think we just need to educate people and we can help increase the percentages of someone finding a match.”
Michelle’s stem cells were harvested through a nonsurgical procedure called apheresis during which her blood was removed and passed through a machine that separated the stem cells. The remaining blood was then returned to Michelle’s system. There is also another procedure where doctors use a needle to extract bone marrow stem cells from the pelvic bone. Bone marrow regenerates so one’s health is not affected.
“I was tired that day but 24 hours later I was fine and back to regular activity,” Michelle said. “The whole procedure only took a few hours and I was able to give someone a second chance at life.
“That’s the way you need to look at it. That you are giving someone a second chance at life.”