Nearly Dhs2m required to save 6-year-old Turkish boy

A mother’s heart filled with pain and defiance begins her story, holding steadfast to hope even as the odds mount.

Each day, she silently prays for her six-year-old son, Gokutuj Ordu, whose life is slipping away before her eyes.

Within the stark walls of a Dubai hospital, her little boy fights an excruciating battle against a relentless, unseen enemy — a cruel disease that slowly eats away at the muscles of his fragile body. Despite the despair that looms over her, she clings to a fragile thread of hope, desperate to save him before time runs out.

In the quiet corridors of Medcare Royal Hospital in Al Qusais, the weary mother sits at her son’s bedside.

She rarely cries. Instead, she studies his every feature, as if trying to etch each moment into her memory before it fades forever.

Her voice, heavy with sorrow and determination, breaks the silence: “Though this pain pierces my heart every hour, I refuse to let go of hope. I dream of the day I’ll see Gokutuj rise above this merciless disease that is consuming his tiny muscles.” At just six years old, Gokutuj faces a battle no child should endure.

His delicate frame is gradually yielding to Duchenne muscular dystrophy, a rare genetic disorder that strips children of their ability to move.

Yet his family refuses to accept despair.

In their relentless quest for salvation, they have journeyed from one hospital to another until their path led them to Al Jalila Children’s Specialty Hospital in Dubai.

Here, amidst moments of uncertainty, they discovered a ray of hope: gene therapy.

Then came the news they had dared to pray for — a single dose could change everything.

This fragile glimmer of hope comes with a staggering cost that threatens to extinguish even the faintest aspirations: Dhs10.6 million.

The mother, her voice trembling with despair, recounted, “My husband sacrificed everything he owned. We were not alone in this — we received support from generous individuals and various organisations, managing to raise over Dhs8 million. But we are still nearly Dhs2 million short to continue the treatment.” Amid these crushing circumstances, her voice carried not surrender but a profound faith interwoven with silent tears.

She beseeched, “I appeal to every compassionate soul, to every parent who knows the searing pain I endure... Help me save my son, even if it’s through a sincere prayer.”

Donation link: https://beitalkhair.org/case/urgent-case-detail/?id=4491.

Dr. Vivek Mundada, a consultant paediatric neurologist, explained that Gokutuj’s condition is among the rarest and most severe genetic disorders.

His window for receiving gene therapy, specifically tailored to his unique genetic mutation, is rapidly narrowing.

He cautioned that any further delay could result in the complete shutdown of the child’s heart and respiratory system.

Time here is not merely the procession of seconds; it is life steadily slipping away from a small body wracked with suffering.

Each passing day without treatment draws the family closer to an unthinkable reality: the confines of a wheelchair, followed by an agonising battle for breath and survival itself. Yet, in the shadow of fear and impending loss, the mother resolutely declares her determination: “I will not lose my son.”

Symptoms of muscle weakness usually start around the age of four, initially targeting the muscles of the thighs, pelvis, and arms, he clarified.

Dr Vivek added that as the condition progresses, most affected individuals lose the ability to walk by the age of twelve and with the progression of the disease, its effects extend to include the heart muscle and respiratory muscles, which can be life-threatening.

He added that DMD is a rare genetic disorder caused by mutations in the DMD gene, primarily affecting males.

It is worth noting that providing this innovative gene therapy for DMD in Dubai is a significant medical and humanitarian achievement, reflecting the UAE’s commitment to making the latest advanced medical treatments and technologies available.

Somaiya Saad, Staff Reporter