6-year-old's family moves to Dubai in desperate bid to save his life

Duchenne Muscular Dystrophy treatment

 Driven by a race against time, the Kidwai family from India has uprooted their lives and relocated to the UAE in a desperate attempt to save their only son, Yunus. Suffering from the debilitating Duchenne Muscular Dystrophy (DMD), Yunus is facing a rapidly closing window to receive a crucial and expensive gene therapy treatment. The cost of this life-altering treatment, estimated by Al Jalila Children’s Specialty Hospital, is a staggering Dh10.37 million.

Yunus, who will turn six on September 6, must receive the treatment before his sixth birthday to be eligible. “The treatment will commence only once the full amount is transferred to the hospital’s bank account or paid to us by way of a cleared cheque,” states a note in the cost estimate provided by the hospital.

Fazal Kidwai, Yunus's father, left his job in the pharmaceutical industry in Lucknow to fully focus on his son’s treatment. "Any father would do the same. Yunus is our only child," he says. "We are a middle-class family, and raising such a huge amount is far beyond our means. But we cannot give up; we have to keep trying."

Reaching his 25th birthday would be a stroke of luck for Yunus, considering many with DMD don't make it that far. DMD is a genetic disorder that causes severe muscle degeneration and weakness. Without the production of dystrophin, a protein essential for muscle function, patients with DMD face progressively worsening muscle damage.

The family moved to the UAE after securing residency, a necessary step to access local charitable aid. "The last time we were here, charities informed us that UAE residency was a prerequisite for assistance,” Fazal explained. Between hospital visits, Fazal and his wife, Kulsum, reach out to various charities every few days for assistance. “We are keeping our fingers crossed and praying for a miracle,” said Kulsum.

Dr. Haitham Elbashir, a clinical professor of pediatrics at Mohammed Bin Rashid University of Medicine and Health Sciences (MBRU), has been closely monitoring Yunus's condition. In his assessment report, he described Yunus as a “lovely child” who is “getting weaker with time.” Dr. Elbashir emphasized the urgency of the situation: "If Yunus is not able to get the new DMD gene therapy treatment on time, he will unfortunately develop many of the complications associated with the disease. Hence, I strongly recommend that Yunus get the DMD gene therapy as soon as possible before he turns six in September."

The gene therapy treatment, delivered through a one-time intravenous infusion, has been administered to over 450 patients. Approved by both the FDA and the UAE Ministry of Health for children aged 4 to 6 years old, it offers a promising treatment option. However, eligibility for treatment ceases once a child crosses the age of six.

Dr. Elbashir highlighted that Al Jalila Hospital, renowned for its expertise in gene therapy, is prepared to offer the treatment. The hospital has extensive experience in Spinal Muscular Atrophy gene therapy, having treated over 65 patients. "We have all the resources and skills required to give Yunus the new gene therapy at our center," Dr. Elbashir assured in his report.

The Kidwais' plight first came to light in February when they travelled to the UAE seeking help. Reflecting on Yunus's condition, Fazal recalled the moment they realized the severity of the diagnosis, saying, "Our hearts sank when we found out."

Duchenne Muscular Dystrophy is a relentless disease caused by a genetic mutation that inhibits the production of dystrophin, a crucial protein for muscle contraction's shock-absorbing function. Without dystrophin, muscles get weaker over time and can't repair themselves properly, causing severe problems with movement. There's no cure for DMD yet, which primarily affects boys, with about 1 in every 3,500 to 5,000 boys born worldwide being diagnosed with the condition.

The Kidwai family remains hopeful that with the support of the community and charitable organizations, they can secure the necessary funds for Yunus’s treatment and give him a fighting chance at a longer, healthier life.