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
When Devanda’s symptoms first appeared, her parents sought help from local doctors. Eventually, they reached Dr. Vrisha Madhuri, a leading expert in pediatric orthopaedics at Christian Medical College, Vellore. Dr. Madhuri diagnosed Devanda with FOP—a disorder that turns soft tissues like muscles and ligaments into bone. This condition limits movement and causes intense pain during flare-ups.
Hope Begins with FOP Trust India
In December 2023, Devanda and her mother attended an FOP awareness meeting in Bengaluru, organized by FOP Trust India. That event gave them more than just information—it provided a community. Devanda received health evaluations from both an orthopaedician and a dentist. These checkups helped guide her future care and treatment.
Quick Action During a Flare-Up
Two weeks later, Devanda had a painful flare-up. Her mother contacted FOP Trust immediately. The team responded quickly and arranged a video consultation with Dr. Madhuri. She prescribed the necessary medication. Because they acted early, Devanda recovered fully within a short time.
Emergency Care in February
In February 2024, Devanda experienced another flare-up, this time affecting her breathing. Her mother once again turned to the FOP Trust for support. They quickly coordinated another consultation with Dr. Madhuri, who advised urgent hospital care.
The family admitted Devanda to Amara Hospital in Tirupati. Doctors diagnosed her with pneumonia—a serious complication for someone living with FOP. She underwent treatment for a week and gradually improved. After her discharge, the family thanked FOP Trust for guiding them through another difficult situation.
Resilience Through Support
Devanda’s strength shines through every step of her journey. With early intervention, expert advice, and strong community ties, she continues to face each challenge bravely. Her story proves that children with FOP can still lead hopeful, supported lives.
The Bigger Picture
FOP Trust India continues to support many families like Devanda’s. The organization links doctors, patients, and researchers. It arranges consultations, spreads awareness, and ensures no family walks this path alone. Their work shows how small actions—timely advice, emotional support, a helping hand—can transform lives.
Together, We Can Make a Difference
Devanda’s story reminds us that rare diseases require awareness, compassion, and community action. When we support those affected, we give them more than care—we give them strength.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
