Couple Flies to UAE in Last Hope After Life-Saving Donation Falls Through

A Lebanese couple, Aziz and Caroline Rizk, are in a desperate race against time to save their nine-month-old son, Jayden, who suffers from spinal muscular atrophy (SMA), a devastating muscle-wasting disease. This genetic disorder, caused by a missing or defective gene, affects motor neurons and leads to progressive muscle weakness, severely impairing swallowing and breathing.

The Rizks arrived in the UAE with a single, determined goal: to secure the $2.1 million required for Jayden's life-saving gene therapy injection, Zolgensma. This drug, the world's most expensive, offers a glimmer of hope for Jayden’s survival. However, their hopes were nearly shattered when a major donor rescinded a promised pledge, leaving them $500,000 short of their target.

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Zolgensma, a gene replacement therapy, works by using a genetically engineered virus to restore some of the missing or nonworking genes. Although not a cure, it is the most promising treatment available for SMA and is accessible in only a few countries, including the UAE, where Dubai's Al Jalila Children's Specialty Hospital provides this therapy. Dr. Haitham El Bashir, head of the Neuroscience Centre of Excellence at the hospital, explains that since 2020, nearly 90 patients from 13 countries, aged between four months and six years, have received the treatment. SMA Type 1, which Jayden has, is the most severe and common form of the disease, usually diagnosed within the first six months of life. Without treatment, it leads to death or permanent ventilation by age two in over 90% of cases.

Faced with the grim reality and urgency of their situation, Mr. Rizk chose not to wait for further donations and risked flying Jayden to the UAE on a ventilator. "This is our last hope," he said. "As a parent, wouldn’t you do whatever you can to save your baby’s life? We know it was a risk to fly him, but there was nothing else we could do."

Jayden, who weighs just 4.6 kg, has been reliant on machines since birth. His parents take turns monitoring his vital signs and draining excess saliva. Three machines ensure his breathing, food intake, and saliva accumulation are managed around the clock. Despite his condition, Jayden smiles when he sees his parents, though he is unable to lift his head.

"I can’t describe the pain of a mother who knows she might lose her firstborn at any moment," Ms. Rizk shared, her voice filled with anguish. The couple signed a do-not-resuscitate (DNR) order in case of any emergency, a heart-wrenching decision reflecting the unbearable reality they face. "This was the hardest decision we have made in our lives," Ms. Rizk admitted. "But this isn’t a life for a baby to be on a ventilator for his remaining days." Mr. Rizk echoed her sentiments, describing the decision as "not what any parent wants to take. It felt like I was signing my death sentence."

The lack of insurance coverage for Zolgensma adds to their challenges, with families often relying on charities, support from the royal family, and contributions from banks and organizations to raise the necessary funds. Dr. El Bashir highlighted that many families face this financial hurdle, making the generosity of donors crucial for survival.

Despite the setbacks, the Rizks remain hopeful. "To know that there's a treatment to save your child but you can’t get it is torture," Mr. Rizk expressed, his plea resonating with parents everywhere. "I will do anything to save his life. We just want to see him take his first steps, hear his first words, and watch him grow. Every parent deserves that joy."

As they await a miracle, the Rizks' story underscores the profound struggles and unwavering love that define parenthood, hoping against hope for a chance to give Jayden the life he deserves.

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