Meet Itzayana 2021 Family Advocacy Week Champion
Itzayana is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Itzayana and her family will discuss her health journey, CHOC Children’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 Itzayana.
Itzayana was 3 months old when she was diagnosed with hypomyelination, an abnormally low amount of myelination that affects the nervous system, and leukodystrophy type 14, a neurodevelopmental disorder leading to decreased muscle tone and diminished motor or cognitive skills. Itzayana also has seizures and severe respiratory problems.
Itzayana’s family was familiar with this diagnosis, having lost their older daughter to the same disease when she was 5 years old.
“Since my older daughter had this same condition, we were more informed and knew we needed to do things differently,” says Yuriana, Itzayana’s mother.
Itzayana receives physical, occupational and stem therapy and sees her neurology team every two months. They monitor her closely and adjust her medicine as she grows and gains weight. Long-term video monitoring helps her doctors make changes to her seizure medications.
At 16 months old, Itzayana is stable. “She loves to listen to music, dance with her sisters help and watch lights,” says Yuriana. “We take it day by day with lots of love.”