UAE child in race against time for Dhs10.6 million life-saving gene therapy

Minutes are no longer just passing time in Yousef’s life, but have become a sharp divide between hope and despair. A child is withering before his parents’ eyes, and a rare disease is silently gnawing at his body, while his family is standing in a harsh race against time to secure treatment that may be the last chance to save him.

Here, life is not measured in years, but in a single dose that may restore the child’s right to childhood, or leave him a prisoner of disability that steals his future.

With eyes filled with sorrow and tears that never stop, Yousef’s mother stood pleading: “Save my son’s life,” words that summarize the pain of a mother who sees her child fading away silently before her eyes.

Give Yousef a chance at life—donate via the link: https://contribute.daralber.ae/mosahmats/View/35046

A beautiful child who used to fill life with noise and movement, Yousef suddenly entered into a harsh battle with a rare disease known as Duchenne muscular dystrophy, a disease that gradually weakens the body, affects movement, breathing and heart functions and reduces average lifespan.

Nowadays, Yousef is in a race against time, as he needs a state-of-the-art gene therapy given in a single dose, known as Elevidys. The US Food and Drug Administration-approved therapy is administered intravenously to help strengthen muscles and slow the progression of the disease that may force children to use a wheelchair at an early age.

Most expensive therapy worldwide

Despite its importance, this therapy is among the most expensive in the world, costing Dhs 10.654 million, an amount that far exceeds the family’s ability, though it is available at Al Jalila Children’s Hospital.

“The doctors told us that we only have two months to get the injection; otherwise, it may not be effective. If this opportunity is lost, Yousef may become completely disabled and his heart may stop beating or his respiratory muscles may be affected later,” said his mother in a broken voice.

Society’s support

Despite the dire situation, the family was not alone; the society rallied to support Yousef, raising Dhs5.6 million so far, a testament to the spirit of human solidarity in the UAE.

“We sold most of our possessions, collected money from relatives and friends and I dedicated my entire life to saving him,” the mother added.

The family also launched a fundraising campaign in co-operation with Dar Al Ber Society, one of the oldest charitable institutions in the country, which supported the campaign through several initiatives including live broadcasts to collect donations. The society still needs around Dhs4 million to go.

“It’s hard to see your son in pain and not be able to help him. It hurts me to know that there is a therapy that can save his life but money stands as an obstacle. He can no longer go to school and all I want is for him to live,” the mother concluded her statement with a painful calm:

Meanwhile, Abdullah Al Falasi, CEO of Dar Al Ber Society, affirmed that efforts were ongoing to support Yousef, adding that supporting humanitarian cases requiring advanced medical care embodied the society’s continued commitment to humanitarian work and placed charitable and healthcare initiatives at the forefront of its priorities.

Dar Al Ber Society is committed to supporting families facing complex medical challenges and working with members of the society to provide specialized treatment, making a real difference in the lives of children.