Driven by a race against time, an Indian family has relocated to the UAE, leaving behind their home and possessions, in a bid to save their only son. Yunus Kidwai has been suffering from the debilitating effects of Duchenne Muscular Dystrophy (DMD).
Yunus, who will turn six on September 6, faces a rapidly closing window to receive a crucial but costly gene therapy treatment that could alter the course of his life. Al Jalila Children’s Specialty Hospital has estimated the treatment cost at a staggering Dh10.37 million.
“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.
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Yunus’s father, Farid Kidwai said he has resigned from his job in the pharmaceutical industry in Lucknow to 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.
Farid explained they moved to the UAE last fortnight after obtaining 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,” he said. Between hospital visits, Farid 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 monitoring the child’s condition.
In his assessment report, he described Yunus as a “lovely child” who is “getting weaker with time,” Dr Elbashir warned: “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.”
Delivered through a one-time intravenous infusion, the drug has already 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.”
In his report, Dr Elbashir mentioned that Al Jalila Hospital, known for its gene therapy expertise, is prepared to offer the treatment. He highlighted the hospital’s 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,” he said in his report.
Khaleej Times previously shed light on the Kidwais’ plight when they travelled to the UAE in February. Reflecting on Yunus’s condition, Farid recalls the moment they realised the severity of the diagnosis, saying, “Our hearts sank when we found out.”
Duchenne Muscular Dystrophy (DMD) 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 fix 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.