Stepping Stone Hospice observes World Rare Disease Day with hope and triumph
This World Rare Disease Day, as we celebrate the victories of brave young souls and their families, let us rally together, reiterating the message that every life, no matter how rare, is extraordinary.
As the world marks World Rare Disease Day today, Stepping Stone Palliative Care Services commemorates the special occasion with a sense of pride and purpose.
Tersia Burger, who founded the five-star accredited non-profit Hospice, has a very personal connection to it.
Years ago, Tersia faced the heart-wrenching reality of her daughter’s rare diagnosis. She lost her only child, Vicky, at the age of 38 after a horrific battle with osteogenesis imperfecta (OI).
Determined to find assistance and comfort during a time of unimaginable struggle, Tersia envisioned a space where families could receive not only medical care but also emotional support.
Thus, Stepping Stone Hospice was established, dedicated to caring for patients and families grappling with the challenges of rare diseases and life-limiting illnesses.
Vicky’s journey sparked a passion in Tersia to create a safe haven where families facing similar challenges could find comfort, support, and care.
Since opening its doors in 2013, the entity has been a welcoming haven of comfort and support to thousands of ill patients.
Defying the odds
Amid World Rare Disease Day, stats have revealed that rare diseases affect at least more than 300 million people worldwide.
Fast-forward to today, the recently established Stepping Stone Hospice Children’s Unit is a beacon of hope in Alberton and neighbouring communities.
This is evident after having seen numerous young patients with rare diseases defy the odds and achieve remarkable recoveries.
“These tiny warriors, many of whom were given little chance of survival, have proven that with love, care, and determination, anything is possible. Take, for example, the story of seven-year-old Lulo, who was born with Edwards syndrome (trisomy 18), a rare genetic condition where three cells attach to chromosome 18, causing growth delays that can be life-threatening,” said Tersia.
When she arrived at their children’s unit, her prognosis was grim. But with the round-the-clock care and therapy provided by the dedicated team, little Lulo began to defy expectations.
“It’s stories like Lulo, Karabo and the late Silvio Batista that remind us why we do what we do. We’re more than just a hospice – we’re a community of hope, where every life matters and every family deserves a chance to thrive, no matter what challenges they face,” Tersia said.
As the hospice marks World Rare Disease Day, it’s a poignant reminder of the importance of raising awareness and support for those affected by rare diseases. By sharing the stories of courage and resilience, the NPO aims to inspire others to join the fight against these often misunderstood conditions.
Today, and every day, Stepping Stone Hospice stands as a testament to the power of love, compassion, and determination. Stepping Stone Hospice is more than just a medical facility; it is a home filled with love, laughter, and unyielding support.
To find out more about their services, contact their offices on 010 442 5059 or via email at info@steppingstonehospice.co.za
