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.
Concerned, his parents rushed him to Anwer Khan Medical College and Hospital in Dhaka. There, doctors raised a terrifying possibility—cancer. They advised an immediate biopsy. But something in the parents’ hearts urged them to pause. Rather than proceed with such a risky step, they sought alternative advice. Neighbors had spoken of Christian Medical College (CMC) in Vellore, India—a place known for expert care and compassion.
Around the same time, Mr. Helal connected with Mr. Nafiz, another parent from Bangladesh. Nafiz’s child had also shown mysterious symptoms—specifically, bent toes. His child was eventually diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), a rare and disabling genetic condition. Through him, the family learned about FOP, Dr. Vrisha Madhuri, and the FOP Trust India.
This new information changed everything.
With the support of FOP Trust India, the family arranged a consultation with Dr. Vrisha Madhuri, now a Senior Consultant at Amara Hospital in Tirupati. During their visit, Dr. Madhuri confirmed that young Waziuzzaman did, in fact, have FOP. Although the diagnosis was difficult to accept, the family finally had clarity.
The Trust ensured that the family received detailed education about the condition, along with a three-month treatment plan. They learned how to manage flare-ups, avoid injuries, and protect their child from unnecessary procedures that could worsen his condition. Dr. Vrisha and the team took time to address every question the family had. They left the consultation feeling informed, supported, and—most importantly—less alone.
The family expressed deep gratitude to both FOP Trust and Mr. Nafiz for their guidance during what could have been a tragic misstep. Had they gone ahead with the biopsy as originally advised, it might have led to irreversible harm. Instead, they now have a care plan, a supportive community, and the tools to navigate this difficult path.
Waziuzzaman is now a part of the growing global family of FOP fighters. His story serves as a reminder of the importance of early diagnosis, informed choices, and community support. For parents navigating similar uncertainty, his journey offers hope and a path forward.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
