
Ally has been through a lot in her eleven years. When she was two years old, she fell off a stool while playing with her brother. A large bruise appeared on her stomach almost immediately, and her parents took her to their local hospital. After blood work, they learned that Ally had B-cell acute lymphoblastic leukemia. “We were told that within days, she would have had uncontrollable bleeding without treatment,” said Ally’s mother, Amber. “Her body was working so hard to fight the cancer that her heart would have given out. It is hard to be glad for your child to fall, but that fall saved her life.”
Ally received her first dose of chemotherapy within 16 hours of diagnosis. Over the two years of treatment that followed, Ally struggled with almost every possible side effect. She suffered three life-threatening infections, temporarily lost the ability to walk, and struggled to rebuild her immune system after every round of chemo.
“We were given a bleak prospect of survival during her second fight with an infection,” shared Amber. “We prayed for a miracle and finally got one when her body started to respond to antibiotics.”
Her treatment finally ended on August 24, 2018, but her battle was far from over because her immune system did not recover as expected. Even years later, her doctors were concerned because she was still living with depleted immune function. In 2022, they decided to do genetic sequencing on Ally and her family to see if a disorder was causing her immune system deficiency. What the sequencing uncovered has lifelong implications for Ally and her family.
“My nephew was diagnosed with leukemia after Ally,” said Amber. “So I expected that if there was an inherited genetic trait linked to her cancer or her body’s response to treatment, it would be on my side. We found out that the opposite was true.”
Ally shares a genetic condition called Lynch syndrome with her father, Justin. This condition increases the risk of many kinds of cancer, including colon cancer, endometrial cancer, and other types. Knowing this will allow Justin and Ally to be monitored for early signs of cancer, giving treatment a greater chance of success. Ally sees a doctor with expertise in genetic conditions every year, and her parents are updated on new testing and protocols. Ally is doing great today. She is in her first year of middle school and enjoys competing in pageants. Her parents are grateful for her health and credit CURE’s investment in precision medicine as a big part of it.
“I have a friend who just went through breast cancer treatment, and her genetic testing cost $4,000 out of pocket,” Amber said. “The cost of repeated gene sequencing for us would have been staggering. But it didn’t cost us a dime because of CURE’s funding. We wouldn’t have known about the syndrome without it. With this knowledge, we can be prepared and should be able to detect any cancer in Ally or Justin early.”