Imagine every few days remembering something so deep that it scares you like it's the first time you found out... Dear boy, When I was twelve weeks pregnant with you, the doctors could not find your nasal bone during a scan. They recommended a NIPT test to check for Down syndrome and other genetic conditions. On that same day, we also received the envelope that held the secret of your gender. My blood was drawn, and the sample was flown to the United Kingdom. Then we waited.

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