Meet Christiana: 2022 Family Advocacy Day Champion
Christiana is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Christiana and her family will discuss her health journey, Texas Children’s Hospital’s role in providing her with necessary health care services, and why the public and our elected officials must invest in the future of patients like Christiana.
At 12 years old, Christiana’s lymph nodes in her neck were so enlarged that she couldn’t eat without difficulty, only weighed 55 pounds and she was sleeping 15 hours a day. Multiple specialists saw her in Albuquerque, but they could not figure it out. The lymph nodes kept getting larger and larger in her face and neck.
After months in the hospital, she was diagnosed with a PIK3R1 mutation with lymphoma, CAEBV and Short syndrome.
“Her diagnosis is extremely rare and not much is known about it,” says Keri, Christiana’s mother. “There is not a specific treatment plan that doctors follow and there is no cure.”
After long hospital stays, biopsies, surgeries, two years of chemotherapy, radiation, a bone marrow transplant and continued treatment, Christiana is getting better. She is closely monitored by the endocrinology team since she was insulin resistant after the transplant and still has issues maintaining a normal blood glucose level.
The COVID-19 pandemic has exacerbated her isolation since she can’t get vaccinated until she’s healthier.
Today, Christiana is still experiencing complications but moving forward at a slow pace. She loves collecting American Girl dolls, playing Roblox, talking to friends and swimming.