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This relentless disease spares no child. It arrives unannounced, silently invading, and turning carefree childhoods into relentless battles against pain and hardship.
Such was the case for.from Turkey whose life was dramatically upended.
Once full of energy, spending his days running and playing like any other child, Gokutuj’s world changed when he was diagnosed with Duchenne muscular dystrophy. This cruel genetic disorder steadily robbed him of his strength, replacing moments of joy with unimaginable struggles. For his mother, the journey became a heartbreaking fight against time, marked by tears and deep anguish.
RECEIVING TREATMENT IN DUBAI
Unable to bear recounting her son’s suffering any longer, Gokutuj’s mother fainted, overwhelmed by the weight of their ordeal. Now receiving treatment at Medcare Royal Hospital in Dubai, Gokutuj battles this rare and merciless condition daily.
Duchenne muscular dystrophy makes no exceptions; it creeps into young lives unnoticed, relentlessly stripping away physical strength and leaving families to navigate a heartbreaking path marked by challenges and indescribable sorrow.
Turkish child, Gokutuj Ordu, living with his family in the UAE, comes from a devout Muslim household that faces their challenging circumstances with resilience, holding onto faith and hope despite the harsh realities of his illness and its rapid progression.
‘HEARTBREAKING REALITY’
His mother shares her struggles, describing how their daily life has been overwhelmed by worry and fear. She painfully recalls how the disease has drastically altered their family’s existence, her words trembling with emotion as she expresses, “Every moment brings added suffering to my son’s condition. Watching him grow weaker before my eyes, unable to intervene, is agonizing. His gradual loss of movement is not just a distant fear; it’s a heartbreaking reality unfolding before us. This illness hasn’t only stripped away his health; it’s robbed our family of joy and stability.”
She goes on to describe the disease as a “silent monster” that has forced her child to surrender the joys of childhood. As his muscles rapidly weaken, she underscores the pressing need for urgent medical intervention, recognising that time is no longer on their side and delaying treatment is not an option.
She emphasises that the final hope rests on an advanced gene therapy, considered among the most expensive in the world, with a price tag of Dhs10.6 million. She highlights that this is more than just a treatment; it’s a vital opportunity to halt the progression of muscle deterioration and reclaim some of the strength stolen from a young body that has yet to fully understand what it means to face such illness.
The mother shares the harrowing path she has travelled to secure the necessary funds, having depleted all her personal resources. Contributions from the Turkish National Donation Fund and a humanitarian initiative by global pharmaceutical company Roche, which generously donated Dhs8,832,000, have alleviated part of the financial burden. Still, the remaining Dhs2,238,000 looms as a significant hurdle that stands in the way of beginning treatment.
‘I STILL NEE DHS2 MILLION’
Caught between fear and hope, she makes a heartfelt appeal: “I’m not asking for the impossible. I just want to see my son live like any other child. Please, help me before it’s too late. I still need Dhs2 million, but what’s truly slipping away is time for a child whose fragile body cannot afford to wait.”
She concludes with a message that encapsulates her anguish: providing this treatment means more than addressing a medical condition, it means saving an entire childhood from fading into nothingness. It gives an innocent child another chance at life, a life filled with play, laughter, and the opportunity to experience moments that remain unfinished.
