Heartbroken Mayo dad in appeal to save son (3) from devastating rare disease

Mayo dad Shahabuddin Ghias has launched a fundraiser for his three-year-old son Salahuddin, who has been diagnosed with Hunter Syndrome (MPS II) — a rare and life-limiting genetic disorder that affects both the body and brain.

The condition causes a progressive loss of physical and cognitive abilities.

Tasks that once came easily, like walking, playing, and communicating, are becoming increasingly difficult for Salahuddin.

“Watching him struggle is heartbreaking,” Shahabuddin writes, “and as his father, I feel helpless.”

The family are seeking support to access specialist therapies, medical treatments, and potentially life-saving international clinical trials such as RGX-121 gene therapy, which could help slow or even reverse the disease’s impact.

Funds raised will go towards speech, occupational and physical therapy, medical tests and doctor visits, enzyme replacement therapy (ERT), medicines and mobility aids, and travel or visa costs if Salahuddin can join a treatment programme abroad.

Shahabuddin explained that the cost of even basic supportive care is becoming overwhelming:

“Every day that passes without proper treatment could make a permanent difference in his life. Please help us give Salahuddin the care and hope he deserves.”

So far, over €550 has been raised towards the €2,400 target.