Against all odds, toddler Eden Green triumphs over Gaucher Disease thanks to life-saving treatment and the unwavering support of Rare Diseases South Africa.
Western Cape, South Africa (05 October 2023) – In a heartwarming story of resilience and hope, a young toddler’s life has been transformed by a life-saving treatment for Gaucher Disease.
Five-year-old Eden Green, who was diagnosed with this rare genetic disorder, has defied the odds and is flourishing, thanks to dedicated medical professionals and the unwavering support of Rare Diseases South Africa (RDSA).
Eden’s journey began in July 2020 when, at just two years old, she was admitted to Red Cross Children’s Hospital. She presented with an enlarged liver and spleen, leaving her parents deeply concerned. After a battery of tests, her blood samples were sent to laboratories in the United States and Libya, ultimately leading to her diagnosis of Gaucher Disease in August 2020. The diagnosis was undoubtedly daunting for her family. Gaucher Disease is a rare genetic disorder characterised by the accumulation of fatty substances in vital organs, including the spleen and liver, which can lead to their enlargement and impaired function. Eden’s prognosis seemed uncertain, but the remarkable journey that followed has been nothing short of inspirational.
Eden’s treatment journey commenced just a month after her diagnosis when she began receiving enzyme replacement therapies via transfusion. Gaucher Disease currently has no cure, which means that her treatment would be life-long. However, the impact of this treatment on her life has been nothing short of miraculous.
Today, Eden is a thriving five-year-old, exceeding the expectations of her doctors. Prior to her diagnosis, she lived cautiously, as her fragile condition made her susceptible to bruising, and her tender abdomen limited her physical activities. However, her growth has been nothing short of astounding since she began treatment. Eden is now considered “tall” for her age and enjoys the same active and joyful life as any other child her age.
Central to Eden’s success story is Rare Diseases South Africa (RDSA), a non-profit organisation founded by Kelly du Plessis in 2013. RDSA has tirelessly advocated for recognition, support, improved healthcare services, and an enhanced quality of life for individuals living with rare diseases. Over the past decade, RDSA’s impactful awareness campaigns and initiatives have positively affected more than 1,800 patients. They have worked diligently with governmental departments, industry stakeholders, and strategic partners to raise awareness and advance rare disease policies.
Kelly du Plessis, the CEO of Rare Diseases SA, emphasised the crucial role of their organisation in providing support during challenging times: “It’s challenging enough being diagnosed with a disease, more so, a rare disease, and that is why we are here. To give the necessary support and information in a time that is stressful and sometimes frightening.”
Eden’s journey underscores the importance of relentless determination when dealing with rare diseases. When faced with the daunting cost of treatment and initial setbacks, Eden’s parents sought solutions and found hope through RDSA. The organisation ensured that Eden received her treatment consistently for the past three years, managing all aspects, including delivery, storage, and necessary consumables. Eden’s parents have a powerful message for families and patients grappling with rare diseases like Gaucher Disease: never stop seeking information and support. Through RDSA, they connected with other Gaucher Disease patients who are now thriving, with successful careers and families of their own. This heartwarming connection has given them the assurance that Eden, too, can lead a long and fulfilling life.
In a world often overshadowed by medical challenges, Eden’s story serves as a beacon of hope, illustrating the transformative impact of dedicated medical professionals, the unwavering support of organisations like RDSA, and the boundless resilience of a young child.
Eden’s journey is a powerful reminder of the power of perseverance and the possibilities that await when communities come together to support those in need.
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