Our Story

Our son is the only known SMARD1 (Spinal Muscular Atrophy with Respiratory Distress) patient in Taiwan — one of fewer than sixty people living with the disease worldwide.

Through the diagnosis, the tracheostomy decision, and the daily caregiving that followed, there was almost no one we could ask. Being able to see how another family had walked the same road would have made a real difference to us. That is why this site exists.

Our position: we share our own experience and reasonably complete information for families evaluating a similar situation — we never steer anyone toward a medical decision.