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