This Mother’s Day, Rare Diseases South Africa honours the caregivers whose persistence, instinct, and advocacy change outcomes — not only for their own children, but for the rare disease community as a whole. Hunter and Olivia’s story is one of those stories. When Rare Disease Becomes Personal Many families affected by rare diseases begin their journey believing, “This won’t happen to us. "Hunter and Olivia’s parents were no different. They were a healthy family. Rare disease

In South Africa, being rare often means being unseen. Baby Sacha For five months, Sacha Ariel was simply a baby being loved. Born a healthy 2.7kg, he thrived in those early weeks, surrounded by warmth, laughter, and the deep bond forming between him and his big brother. Like so many families, Sacha’s parents were living the joy of newborn life — unaware that a rare diagnosis would soon change everything. When Sacha became ill and was admitted to hospital for dehydration and p

Kyle Small’s Story and Why Haemophilia Awareness Matters Haemophilia is often misunderstood. Many people believe it means bleeding excessively from small cuts, when in reality, the most serious danger lies beneath the surface. Haemophilia is a hereditary blood disorder passed from mother to child, where the blood does not clot properly. People with haemophilia do not bleed faster than others, but they bleed for much longer, and internal bleeding, especially into joints, muscl

Bruce Campbell: The Rare Warrior Who Refuses to Stop At Rare Diseases South Africa , we celebrate resilience, courage, and community, values personified by Bruce Campbell , a true Rare Warrior whose journey inspires both the rare disease community and the sporting world. A Life of Resilience Bruce’s battle with rare disease began at six years old when he was diagnosed with Guillain-Barré Syndrome , leaving him paralysed and on a ventilator. Against the odds, he learned to wal

I was twelve years old when I was diagnosed with Neurofibromatosis Type 2 (NF2) . My dad had it, and with a 50% chance of passing it on, my family always knew it was something we needed to watch for. Still, nothing could have prepared us for how my life would unfold. A Childhood Marked by Tumours and Treatment My first MRI revealed a tumour growing on my vestibulocochlear nerve. I had just turned thirteen when I began my first twenty‑eight sessions of radiation . Within month

My name is Reshmie , and I live with multiple rare diseases. Over the years, I have faced thyroid cancer , undergone a splenectomy , and had a portion of my pancreas removed in a pancreatectomy . My medical challenges have been heavy, unpredictable, and often overwhelming—yet I am not alone as I continue fighting. Every day I remind myself: I am still here, and I am still going. What Does “Equity” Mean in My Story? For me, equity begins with simply being heard . The hardest p

When Victoria (Vixi) was diagnosed at just 15 years old with Behçet’s Disease , everything we thought we knew about her health changed. Behçet’s is a rare, complex inflammatory disorder that most doctors have never seen in their careers. But long before her diagnosis, her symptoms were already shaping her life. Early Signs No One Could Explain Since she was little, Vixi struggled with painful mouth ulcers. We were given many explanations such as stress, vitamin deficiencies

As the last‑born daughter of Thomas and Nombulelo Sidzamba, I, Zintle , never imagined how dramatically my life would change after being diagnosed with Spinal Muscular Atrophy (SMA) Type 4) in 2015. SMA Type 4 is a rare genetic disorder that affects the nerve cells responsible for voluntary muscle movement, causing progressive muscle weakness and atrophy. Before the Diagnosis Before SMA entered my life, I was active, energetic, and constantly on the move — playing tennis, da

My name is Ruhan Adendorff , I’m 34 years old , and I have a rare condition called Sotos Syndrome . I want to share my story with the world to spread motivation, encouragement, and Sotos love to all my wonderful Sotos people across the globe. My Journey with Sotos Syndrome I was diagnosed with Sotos Syndrome when I was five years old . Growing up as a child with Sotos was not easy. In fact, it was very hard. At school I was bullied and made fun of. People would say things lik

From the moment Luke was born, he would scream and scream. All his milk would come back up, and he began to refuse the breast. We tried formula, but the same thing happened. He was hungry, would try to drink, then pull away and cry. I was told it was colic. I was told he was being “naughty” and that it was behavioural. I was told it was allergies. We saw a gastroenterologist when he was 14 months old, and she performed a scope that confirmed EoE. It is a delayed reaction alle