Mayah’s journey began with uncertainty. The youngest of five children, her parents learned early in the pregnancy that she had a fatal syndrome. At 17 weeks, doctors advised terminating the pregnancy, but her family chose hope. At 25 weeks, doctors noticed small improvements in Mayah’s skeletal development, giving her family a glimmer of hope. But doctors were cautious, warning them that her malformed airway would make survival outside the womb impossible.
Mayah was born at 35 weeks, and doctors immediately intubated her, keeping her alive as she spent six months in the NICU. Her parents, unprepared for the complexity of her care, felt overwhelmed by the constant monitoring of her ventilator, tracheostomy, and feeding tube. But slowly, they found a routine. Mayah began to thrive, her siblings surrounded her with love, and she started to show signs of growth.
By age 3, she no longer needed her feeding tube. By 4, she was walking. At 5, with the help of hearing devices, she began to speak—defying the doctors who had said she would never communicate. Her development was slow, but each milestone was a victory. Mayah’s dad would say she’s a slow cooker - she’s getting there, but it just takes longer. The support of her classmates and their compassion filled her parents with gratitude.
However, as Mayah grew, her scoliosis worsened, affecting her lung function. After numerous visits to specialists in Wilmington, DE, she was diagnosed with a rare form of dwarfism, a condition considered fatal in infancy. The doctors and the family connected with a supportive community of parents who shared similar challenges, seeking the best possible care for their children.
In August 2024, after months of careful consideration, Mayah underwent a 12-hour surgery to insert growing rods into her spine. The surgery, critical for preventing further damage to her lungs, required the use of donor bone to stabilize the screws in her spine. The generous donations from two donors played a pivotal role in the success of her surgery. Thanks to these donations, Mayah’s scoliosis was corrected, and her lung function improved.
Recovery was challenging. Mayah had to relearn how to walk and spent three months recovering from the surgery. But, with determination and love, she emerged stronger. Now, her doctors are optimistic that she will soon be completely off the ventilator during the day.
Mayah’s family’s perspective on donation changed dramatically during this time. They had always been aware of organ donation, but they didn’t fully grasp the impact of tissue and bone donation until they saw how it transformed their daughter’s life. This newfound understanding of donation was deepened by personal experience.
Mayah’s grandfather, who had been on the transplant list for a liver, received a donation that saved his life. His recovery inspired the family and further opened their eyes to the life-saving power of donations.
Now, Mayah’s family shares their story to raise awareness about the importance of both organ and tissue donation. They are grateful to the donors who made Mayah’s surgery possible and continue to inspire others with her incredible resilience. Thanks to the generosity of donors, Mayah continues to defy the odds and inspire everyone who hears her story. She is living proof that even in the face of adversity, miracles can happen.