In a quiet village in Mayiladuthurai district, Tamil Nadu, lives 10-year-old Pragdiswaran, a bright boy with a powerful story of strength, struggle, and hope. His life changed at just 30 months old, when a red patch on his neck led to a local hospital referral. Suspecting cancer, doctors in Thanjavur performed a biopsy and administered injections—actions that triggered widespread body swelling.
Eventually, his family took him to Christian Medical College (CMC) Vellore, where he was correctly diagnosed with Fibrodysplasia Ossificans Progressiva (FOP). A genetic test confirmed the rare condition. Although doctors at CMC explained the nature of FOP, his anxious parents continued to search for answers and visited Chennai—only to receive the same diagnosis.
After a lack of progress and facing the challenge of travelling long distances for care, the family stopped seeking treatment. In the past year, Pragdiswaran experienced three flare-ups, the most recent just two months ago—none of which received medical intervention.
Despite these setbacks, Pragdiswaran lives with remarkable adaptability. During a recent FOP Trust India home visit, team members observed his creative methods of independence. He uses a small cricket bat to operate light switches, plays carrom while standing at a low table, and enjoys cricket with his father and brother. The team recommended tools to improve his quality of life, including a low-level cot, a standing table for meals and play, and a lighter cricket bat.
The home visit gave the family renewed hope. They expressed gratitude for the FOP Trust’s care and said they now felt more confident to reach out for future support and information—both from FOP India and IFOPA.
