Every journey with Fibrodysplasia Ossificans Progressiva (FOP) is filled with quiet moments of courage—whether it’s a child leading her classroom, a family contributing despite hardship, or the community helping track down a lost contact. In July 2025, the FOP Trust India team encountered three such stories that reflect resilience, kindness, and deep commitment to care.
Sivaji’s Story: A Gift from the Heart
Sivaji, a young man from a village near Madanapalle, Andhra Pradesh, continues to inspire everyone who meets him. His father, an agricultural laborer, supports the family in a modest government-allocated home. Though struggling with limited means, Sivaji showed deep commitment to his health. When advised to undergo genetic testing at BIRRD Hospital in Tirupati, his financial situation made it difficult. FOP Trust India stepped in to cover the cost.
But what moved the team most was Sivaji’s response—despite his circumstances, he offered to contribute ₹2,000 to the Trust. His gesture, though modest in amount, was profound in spirit. It reminded us that dignity and gratitude often shine brightest in those who have the least.
Khushi’s Confidence
The team also visited Khushi’s home. Bright and enthusiastic, she greeted the team with a wide smile. Her parents proudly shared that she’s doing well both physically and academically. In fact, Khushi has recently been made the class monitor—a responsibility she takes seriously and a title that reflects her leadership and determination. Her story is a powerful reminder that children with FOP, when supported properly, can thrive and lead.
Searching for Mokshith
Not every update ends in a meeting. The team also attempted to trace Mokshith, a child recently diagnosed with FOP who was last known to live in the Mouthwash Layout near Bannerghatta Road, Bengaluru. The address led the team to a complex of rental apartments across six blocks, now mostly occupied by new tenants. The area, being home to a floating population, made it hard to track the family.
Though phone numbers were unreachable, neighbors were informed about Mokshith’s case and asked to notify the Trust if they ever come across his family. While this part of the journey remains open-ended, it highlights the reality of working with transient communities and the importance of ongoing outreach.
These three stories may differ in detail, but they all carry a shared theme—hope, dignity, and the tireless effort to stay connected. Through each home visit and conversation, FOP Trust India continues to uphold its mission of standing by every patient, no matter how far, quiet, or uncertain their path may seem.
