For Mayashree from Manipur, every treatment is a step forward in her fight against FOP. Earlier this month, she received her second dose of Pamidronate at the Regional Institute of Medical Sciences, Imphal. Unlike her first experience, this session went smoothly without complications. Her father expressed deep gratitude to Dr. Vrisha Madhuri, the local medical […]
Ashik, a young boy from Chennai, faced one of his toughest moments in mid-August. A painful flare-up with skin rashes brought him to the emergency department of Amara Hospital. Under the care of Dr. Vrisha Madhuri, he received immediate treatment and recovered well enough to return home the next day. A few days later, Ashik […]
The first week of August 2025 brought a mix of patient updates, flare-up management, and new awareness opportunities for the FOP Trust India team. Arzan’s father reported that his son is improving on the prescribed medication from Dr. Vrisha Madhuri, though the swelling has reduced only slightly. Devananda, on the other hand, is doing well […]
Pranav, a young boy from Salem, Tamil Nadu, has been living with Fibrodysplasia Ossificans Progressiva (FOP)—a condition that turns soft tissue into bone, limiting movement and posing severe health risks. In recent months, his journey took a critical turn when he experienced multiple falls that resulted in a head injury, leading to neurosurgery. By July […]
Patient Story: Sanskriti’s Strength – A Young Voice of Hope from Uttar Pradesh In a quiet town in Uttar Pradesh, 10-year-old Sanskriti Gupta is facing one of the world’s rarest diseases with quiet strength and a brave heart. Diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), Sanskriti’s life changed in ways her family could never have imagined. […]
In different corners of South India, two children—Ashik from Chennai and Devananda from Kerala—are walking a brave path shaped by Fibrodysplasia Ossificans Progressiva (FOP). Their journeys are different, but what binds them is the care, coordination, and unwavering support they’ve received from their families and FOP Trust India. Ashik’s Journey: Finding Relief in Time When […]
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. […]
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 […]
In a modest home in Bangladesh, a two-and-a-half-year-old boy named Waziuzzaman Muhammad has begun a journey few could imagine. As the firstborn child of Mr. Md Helal and Mrs. Nahida Khamom, Waziuzzaman seemed like any other healthy toddler. But in May 2023, a sudden and unexplained lump on the back of his neck changed everything. […]
A Brave Heart from Chengannur In the quiet town of Chengannur in Kerala’s Alappuzha District lives 10-year-old Devanda. She shows incredible courage while facing Fibrodysplasia Ossificans Progressiva (FOP), a rare and challenging genetic condition. Her story highlights the power of early diagnosis, strong community support, and her family’s unwavering care. Diagnosis That Changed Her Life […]
