Juván Miracle Mission

In June 2024, our three‑month‑old son, Juván, suddenly became severely ill with unrelenting diarrhea. What seemed like a simple virus became a long and terrifying medical journey. After months of hospital stays, countless tests, and endless uncertainty, he was diagnosed with Autoimmune Enteropathy (AIE) — a rare, life‑threatening condition where the immune system destroys the small intestine, preventing the body from absorbing nutrients.

Despite breastfeeding, specialised formulas, and every intervention possible, he could not be nourished naturally. On 12 July 2024, he was placed on Total Parenteral Nutrition (TPN) to keep him alive.

Over the next year, Juván endured more than 20 procedures, including multiple central lines, biopsies, scans, genetic testing, and ongoing monitoring. He battled infections, complications, and—most terrifying—acute kidney failure caused by obstructing kidney stones. When he finally passed a few drops of urine, it felt like a miracle.

At 14 months old, during preparation for ventilation after severe metabolic acidosis, his heart stopped. After 20 minutes of resuscitation, he came back. Our miracle returned to us.

Through this entire journey, we were held by our family, Discovery Health (with special thanks to Marius de Waal), and Dr. S. Strobele, who fought for our son with tireless dedication and compassion.

What Equity Means to Us

Equity means fair access to diagnosis, specialists, life‑saving treatment, emotional support, and financial protection. Without medical aid, our son would not have survived. Rare disease families often face delays, dismissal, and systems not built for their needs.

Day‑to‑Day Life

Every day revolves around medical care — medications, feeds, line care, watching for infection, and constant vigilance. There is no “off time.” Support, routine, faith, and small moments of joy keep us going.

Hope & Strength

Our hope comes from Juván’s resilience, our faith in God, our family, and a medical team who sees our son, not just a diagnosis. Every smile, stable day, or tiny improvement is a victory.

What We Want Others to Know

Rare diseases are lonely, complex, and often misunderstood. Families become advocates overnight. Compassion, patience, and support matter more than people realise — behind every rare diagnosis is a child fighting to live and a family fighting with them.