Meet Kiahaura – Leukemia Warrior
Karina, Kiahaura's mom, shared, “Your support [The NCCS] has given us breathing room during one of the hardest seasons of our lives...it has reminded us that we are not alone...Thank you again for standing beside us.”
Kiahaura, lovingly called Rara, was born in January of 2025 with Trisomy 21 (Down syndrome), which has come with its own set of medical complexities and ongoing care needs since birth. From early on, her family knew her journey would include extra appointments, therapies, and specialist visits. Rara has faced each challenge with a strength that amazes everyone who meets her.
At 5 months old, Rara underwent open heart surgery to correct congenital heart defects related to Trisomy 21. This was incredibly difficult for her family, as it’s terrifying to have your child endure heart surgery, especially at such a young age. But once again, Rara persisted.
Two months later, at only 7 months old, Rara received a new, devastating challenge.
“We were still in the process of helping her recover physically, emotionally, and financially when on August 22, 2025, we received the devastating news that she had developed leukemia. That diagnosis changed everything overnight,” shared her mom, Karina.
Since then, their lives have revolved around hospital admissions, chemotherapy treatments, constant lab work, medications, immune precautions, and close monitoring due to the increased risks that come with both leukemia and Down syndrome. Rara spent most of the first four months of treatment inpatient. Karina shared, “We experienced some complications during treatment, which has meant longer hospital stays, heightened infection risks, and additional medical oversight due to her heart condition. It has been overwhelming at times, but Rara continues to fight with a smile.”
Karina also has a teenage daughter who was stunned by her baby sister’s diagnosis but has found ways to cope and manage. While she is unable to visit the hospital often because of school, she calls frequently to check in on her parents and baby sister.
Even in hospital rooms, Rara dances, plays pretend dentist, laughs with her nurses, and finds ways to light up every space she’s in. Her resilience is something her family witnesses daily. She is not defined by her diagnoses; she is defined by her joy, her determination, and her spirit.
By February of 2026, she had completed six rounds of chemotherapy and endured multiple transfusions while at the hospital. Her treatment has had its highs and lows, including a cold that hit harder because of her low counts. Her family is fatigued by the immense weight of medical obstacles and treatments. “I just want my baby to be healthy again,” Karina shared. Despite this, her care team is pleased with how her treatment is progressing. Because of the chemotherapy Rara has endured to fight her cancer, her doctors want to keep an extra close eye on her heart following her earlier surgery.
With her dad needing to stop working to help care for her full-time, their income changed drastically while their expenses continued to increase. They also live in a rural area and must travel long distances for Rara’s treatment. “Between copays, medications, medical supplies not covered by insurance, frequent travel for treatment, gas, parking, lodging, meals, car maintenance, and everyday living expenses, the burden added up quickly,” her parents shared.
To ensure Rara never spent a day alone during treatment, her parents alternated their days at the hospital so they can also maintain some normalcy at home with their other daughter.
The National Children’s Cancer Society is uniquely equipped to provide practical support for the challenges Rara’s family faced. They received financial support through our Transportation Assistance Fund, helping to cover gas to and from the hospital. Our Emergency Assistance Fund gave them peace of mind when it came to the additional expenses they incurred during their daughter’s treatment. Rara’s family also received two of our free publications, our parent guide and our siblings guide, to help them process Rara’s diagnosis and prepare for the road ahead.
Karina shared, “The assistance from the NCCS has helped relieve some of that pressure so we can focus our energy where it belongs, on Rara’s health and well-being. Your support has given us breathing room during one of the hardest seasons of our lives. Just as important, it has reminded us that we are not alone. If sharing Rara’s story helps inspire another family or brings awareness to the realities families like ours face, then we are honored to do so. Thank you again for standing beside us.”