Stepping Stone Palliative Care Services marked World Rare Disease Day with an inspiring tribute to the courage of children and families battling rare diseases. The event highlighted both the triumphs and challenges faced by these “tiny warriors” and emphasized the importance of supporting individuals affected by rare and life-limiting conditions.
Founded by Tersia Burger, Stepping Stone Hospice was born out of a deeply personal experience. After the devastating loss of her daughter, Vicky, to osteogenesis imperfecta (OI) at the age of 38, Tersia was driven to create a safe haven for families navigating similar struggles. Her vision was to provide not only medical care but also emotional support for those confronting rare diseases. Since its opening in 2013, Stepping Stone Hospice has become a cornerstone of hope for thousands of patients and families.
“Vicky’s journey inspired me to build a place where families facing the impossible could find comfort, support, and care,” Tersia Burger said. “We wanted to create an environment where every life, no matter how rare, is valued and celebrated.”
Rare diseases, which affect more than 300 million people globally, often go undiagnosed or misdiagnosed due to their complexity and the lack of widespread awareness. Stepping Stone Hospice’s mission is to raise visibility for these conditions while providing life-saving care and emotional support.
Among the many success stories from Stepping Stone Hospice is that of seven-year-old Lulo, born with Edwards syndrome (trisomy 18), a rare genetic disorder that causes severe developmental delays and is typically life-limiting. When Lulo first arrived at the children’s unit, her prognosis was grim. However, with round-the-clock care and a dedicated team of specialists, she defied the odds and began to show significant improvements.
“These tiny warriors, many of whom were given little chance of survival, have proven that with love, care, and determination, anything is possible,” Tersia said. “Lulo’s story, along with those of Karabo and the late Silvio Batista, remind us of the extraordinary strength of these children and the families who stand by them.”
Stepping Stone Hospice’s Children’s Unit in Alberton continues to serve as a beacon of hope, not only for local families but also for those in neighboring communities. The unit has been instrumental in providing specialized care for children with rare and complex conditions, helping them to achieve remarkable recoveries that defy medical expectations.
As World Rare Disease Day shines a spotlight on the global impact of rare conditions, Stepping Stone Hospice remains committed to its mission of awareness and advocacy. By sharing the stories of courage and resilience, the hospice hopes to inspire further support for those affected by these often-overlooked diseases.
“At Stepping Stone, we believe every life matters,” Tersia added. “We are more than just a hospice; we are a community where every family is given the opportunity to thrive, no matter the obstacles they face.”
Today, and every day, Stepping Stone Hospice stands as a symbol of love, compassion, and unyielding dedication, offering a place of solace for those fighting against rare diseases.
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