Published on 5/25/2023
Zayna, an 18-month-old baby, has been defying the odds since her birth. Despite facing multiple medical challenges, she continues to make remarkable progress. Born with CHARGE Syndrome, a complex condition affecting various aspects of her health, Zayna’s story is one of resilience, determination, and the unwavering support of her mother, Taylor.
Understanding CHARGE Syndrome
CHARGE Syndrome is a rare genetic disorder that can cause a wide range of physical and medical difficulties. Zayna’s case is unique, as she was born with both a vision defect called coloboma and a missing kidney. This syndrome affects each child differently, making it a complex and individualized journey for families.
The Early Days
Zayna spent her first four months in the Neonatal Intensive Care Unit (NICU), where her mother faced an overwhelming amount of information about her condition. Taylor, initially scared and unprepared, would find solace in her car, shedding tears because she felt she didn’t have a strong support system. However, fueled by her love for Zayna, Taylor made the decision to embrace the challenge and help her daughter thrive.
Early Childhood Intervention (ECI)
A turning point in Zayna’s development came when she started receiving Early Childhood Intervention (ECI) services at The Warren Center a few months after coming home. ECI provided vital support, including physical therapy (PT) and assistive technologies (AI), helping Zayna reach important milestones. Additionally, she received feeding therapy from a different home health agency, ensuring her nutritional needs were met.
Today, Zayna has made impressive strides in her development. She can now pull up to stand and is actively working on walking. You can watch a video of her walking progress in the social media player below. Despite her vision and hearing loss, she communicates effectively using sign language, with signs such as “more,” “food,” “please,” “all done,” and clapping. Zayna also recognizes familiar faces, identifies body parts like her head and nose, and responds to her name. Witnessing her progress, Taylor remains hopeful that Zayna will continue to thrive and live a near-normal life.
View this post on Instagram
A Mother’s Journey
Throughout this challenging journey, Taylor has grown immensely. She has found acceptance and confidence in herself as a caregiver, advocating for Zayna’s needs. Despite her worries about the future, Taylor remains dedicated to attending numerous doctor appointments each month. Zayna’s medical care involves consultations with 15 to 20 different specialists, including two doctors monitoring her vision and kidney.
Ongoing Needs and Support
Zayna continues to require support for her developmental skills. She experiences severe swallowing and breathing issues, relying on a g-tube for nutrition and requiring nighttime oxygen due to sleep apnea. However, Taylor expresses her gratitude for the high-quality services provided by The Warren Center, as they have exceeded her expectations in helping Zayna reach her full potential.
Zayna’s story serves as an inspiration to all, showcasing the strength and resilience of a child born with CHARGE Syndrome. With the unwavering dedication of her mother and the support of various healthcare professionals, Zayna continues to make remarkable progress. Though challenges persist, her journey is a testament to the power of love, determination, and the importance of accessible healthcare services. As Zayna continues to grow, the hope remains that she will lead a fulfilling and meaningful life, defying the odds every step of the way.