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19th Ave New York, NY 95822, USA

Mom of girl with rare condition says ‘her heart breaks’ when people do this to her daughter!

When Elza’s daughter was born prematurely, it was a delightful surprise for the family. Elza reminisced about sharing her pregnancy journey with her sister, sister-in-law, and a few close friends who were all experiencing pregnancies around the same time. Having a support system to discuss the highs and lows of pregnancy was truly special for her. Despite being considered high-risk due to a heart-shaped uterus, Elza described her pregnancy as smooth sailing, contrary to initial concerns.

Regular ultrasounds and prenatal tests were part of Elza’s routine, especially given her age at the time of delivery. When labor began unexpectedly while she and her husband were preparing for their daughter Bella’s arrival, it caught them off guard. Bella came into the world weighing five and a half pounds, but her birth was marked by concern as Elza noticed a small folded ear, signaling that something wasn’t quite right. The joyous anticipation of welcoming their daughter turned into confusion and distress as medical professionals swiftly moved Bella to the Neonatal Intensive Care Unit (NICU) for urgent treatment. Specialists evaluated Bella and discussed potential syndromes with her parents, presenting them with difficult decisions to make.

The following day, amidst the turmoil, Elza and her husband found solace in the presence of their supportive parents. Facing the daunting decision of which hospital to choose for Bella’s care, they reached out to a trusted friend in the medical field for guidance, highlighting the importance of their loved ones during challenging times. Entering the NICU, Elza was confronted with the sight of her fragile daughter surrounded by wires and medical equipment. Despite the emotional strain, Elza and her husband remained steadfast in their support for Bella, holding her tiny hands and offering reassurance as she began her medical journey. Bella’s diagnosis of Treacher Collins syndrome, a rare genetic condition affecting facial bone development, brought clarity to her parents but also presented them with new challenges. Bella underwent her first surgery to receive a gastric tube, marking the start of a lengthy NICU stay filled with medical procedures and emotional highs and lows.

Finally, after eight weeks, the day arrived for Bella to go home with her devoted parents. Their journey continued with numerous hospital visits and surgeries, but Elza and her husband remained resilient, embracing their roles not only as parents but also as caregivers. As Bella grew, so did the family’s routine of therapies and classes tailored to her needs. Despite the challenges, Elza found joy in her daughter’s resilience and milestones. Yet, she couldn’t ignore the heartache of witnessing strangers’ stares and the lack of response to Bella’s friendly greetings. Determined to advocate for her daughter, Elza and her husband chose to address the stares with grace and education, striving to create understanding and acceptance in their community. Despite the hurdles, their love and dedication to Bella continue to guide them through their unique journey.