When people first meet Zayyan, they see a cheerful seven-year-old boy with a warm smile, sparkling eyes, and endless curiosity. He loves watching scenery through a car window, exploring the world, playing with his sister, and laughing at little moments.
But for years, his parents, Indian expats Jagfar and Jasmine Jagfar have watched their son struggle. He was late to reach every milestone. His younger sister, Izzah, quickly outgrew him and people would often ask if she was the elder child. “We kept visiting doctors and specialists but no one could figure out what was the issue,” said Jagfar, in an interview with Khaleej Times.
By the end of 2024, his condition deteriorated rapidly. He could no longer climb stairs. He tripped climbing into the school bus. That was the breaking point when the Sharjah-based family decided to take him to a neurologist at Rashid Hospital in Dubai. “At the very first visit, the doctor picked up what his issue was,” Jagfar said.
Stay up to date with the latest news. Follow KT on WhatsApp Channels.
The diagnosis was Duchenne Muscular Dystrophy, a rare and progressive genetic disorder that causes irreversible muscle degeneration. Without intervention, children who once run, jump and climb eventually lose those abilities. Respiratory complications and heart issues may also develop in the future.
Time is running out
“We took three days to process it,” Jagfar recalled. “Since then, we were just focused on finding a solution.” Currently, there is no cure for DMD but there are treatments to slow the progression of the disease and help children manage their symptoms.
The treatment comes in the form of Elevidys® gene therapy, a one-time injection designed to deliver a functional form of the protein dystrophin that muscles need. It is one of the most expensive treatments in the world. The official cost estimate from Al Jalila Children’s Specialty Hospital was Dh10,654,465.
For months, the family struggled to find a way. They crowdfunded in India but couldn’t raise funds in the UAE. Two months ago, with Zayyan turning eight in September and his condition deteriorating rapidly, Al Jalila Foundation stepped in, waived regulations, and granted official authorisation to fundraise in the UAE. Since then, the family has raised Dh1.5 million but time is running out rapidly.
“Recently, we found that he developed cataract in his eyes,” Jagfar said. “We don’t have a lot of time remaining.”
If Zayyan loses his ability to walk and is confined to a wheelchair, the gene therapy will no longer be effective. “Every day that passes without this treatment is another day Zayyan’s body grows weaker,” the family wrote in their appeal.
A mother’s love
Yet through it all, one figure has emerged as an unlikely champion— Zayyan’s mother, Jasmine. Before the diagnosis, she was a quiet homemaker who rarely spoke publicly. Today, driven entirely by love for her son, she leads the awareness campaign, manages his social media, creates videos, coordinates collaborations, and reaches out to journalists, influencers, and philanthropists.
“Her determination has helped Zayyan’s story reach thousands of people,” Jagfar said. “A mother’s love can inspire extraordinary courage.”
As parents, Jagfar and Jasmine’s dream is simple. “We hope he can continue to walk,” said Jasmine. “We hope he can continue to laugh. We hope he can continue to learn. We hope he can continue to dream.”
Source: Khaleej Times