UAE Family Races to Raise Dh10.6 Million for Son’s Rare Disease Treatment

A Sharjah-based Indian family is racing against time to raise Dh10.65 million for a gene therapy that could help preserve their seven-year-old son Zayyan’s ability to walk.

Zayyan has been diagnosed with Duchenne muscular dystrophy (DMD), a rare and progressive genetic disorder that causes muscle degeneration. The condition can gradually affect mobility and may eventually lead to serious respiratory and cardiac complications.

For his parents, Indian expatriates Jagfar and Jasmine Jagfar, the diagnosis came after years of uncertainty over their son’s delayed developmental milestones.

Condition deteriorated rapidly

Zayyan’s health worsened significantly towards the end of 2024. He began struggling to climb stairs and even had difficulty getting onto the school bus.

The family eventually took him to a neurologist at Rashid Hospital in Dubai, where doctors identified the condition.

Although there is currently no cure for DMD, treatments are available that can help slow the progression of the disease and manage its effects.

The family is now seeking access to Elevidys gene therapy, a one-time treatment designed to deliver a functional form of dystrophin, a protein essential for healthy muscle function.

According to the family, the treatment has been estimated at Dh10,654,465 by Al Jalila Children’s Specialty Hospital.

Family has raised Dh1.5 million

The family initially attempted to raise money through crowdfunding efforts in India but faced difficulties raising funds in the UAE.

Two months ago, the Al Jalila Foundation granted the family official authorisation to conduct fundraising in the UAE. Since then, they have raised around Dh1.5 million, leaving a substantial amount still to be collected.

The family says time is particularly critical because Zayyan’s condition continues to deteriorate. He has also recently developed cataracts, adding to the concerns surrounding his health.

The parents fear that if their son loses the ability to walk and becomes wheelchair-dependent, the gene therapy may no longer be effective.

Mother leads campaign for her son

Zayyan’s mother, Jasmine, has taken a leading role in the campaign to raise awareness and funds for her son.

She has been managing his social media presence, producing videos, contacting media organisations and reaching out to influencers and potential donors in an effort to bring greater attention to his situation.

The campaign has already helped Zayyan’s story reach thousands of people.

For Jagfar and Jasmine, the goal goes beyond raising money for treatment. They want their son to retain the simple freedoms many children take for granted walking, laughing, learning and continuing to dream.

As the family races to raise the remaining funds, they are appealing to the UAE community and well-wishers for support in giving Zayyan a chance to access the treatment before it is too late.