A mother from Thornaby has taken it upon herself to shed light on the rare genetic condition known as Smith-Lemli-Opitz syndrome (SLOS), which tragically claimed the life of her nine-month-old daughter. In a heartfelt tribute to her daughter’s memory, she is channeling her efforts into fundraising for the hospitals that provided care for her beloved child.

Lisa Rogers, a health care assistant, recalls the fateful day on September 22, 2020, when she sought medical attention at the University Hospital of North Tees due to concerns about her baby’s movements following a seemingly normal pregnancy. Little did she know, this visit would mark the beginning of a journey filled with challenges and heartache.

After a labor induced delivery, Lisa welcomed her daughter, Nancy Jo Anne Rogers, into the world on September 25, 2020, via caesarean section. However, the joy of her arrival was short-lived as medical professionals noticed anomalies that hinted at underlying issues. Nancy’s difficulty breathing, along with physical abnormalities such as slanted eyes, webbed toes, and a missing finger, raised concerns among the medical team.

Shortly after birth, Nancy was transferred to the special care baby unit, where her complex medical needs were closely monitored. Suspicions of a syndrome arose as her symptoms were further evaluated, leading to her eventual diagnosis of Smith-Lemli-Opitz syndrome (SLOS) the following month. This rare condition, characterized by abnormalities in various body systems and low cholesterol levels, presented a myriad of challenges for Nancy and her family.

Despite the grim prognosis given by medical professionals, Nancy defied the odds and continued to grow and develop. Her resilience and zest for life were evident as she reached milestones that surpassed expectations. From sharing cherished moments at home to enjoying holidays and laughter-filled days in the water, Nancy’s indomitable spirit touched the hearts of all who knew her.

Tragically, Nancy’s journey came to an untimely end on July 7, 2021, when she succumbed to heart failure and sepsis at the University Hospital of North Tees. Lisa recalls the heartbreaking moment when Nancy passed away in her arms, surrounded by love and comfort.

In the wake of Nancy’s passing, Lisa and her family have channeled their grief into action, dedicating themselves to raising awareness of SLOS and supporting the organizations that provided care for their beloved daughter. Through fundraising efforts and donations to the special care baby unit, they hope to honor Nancy’s memory and express their gratitude to the dedicated healthcare professionals who supported them throughout their journey.

As Lisa reflects on Nancy’s remarkable life and the impact she made in her nine short months, she finds solace in the memories they shared and the love that will forever remain in their hearts. In paying tribute to Nancy’s legacy, she hopes to inspire others to cherish each moment and embrace the precious gift of life.