Help Iman Breathe: A 12-Year-Old's Lifelong Battle with Rare Wolf-Hirschhorn Syndrome
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Pertubuhan Kebajikan Amal Jariyah Nur Hidayah Selangor is a non government organization who help people in need

Ahmad Iman Khalis bin Yus’am, 12, is not like other children. There is no laughter, no tiny feet running around — only breathing machines and feeding tubes that accompany him every day.

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Since birth, Iman has been burdened with unimaginable pain. He was born with a cleft lip and palate, and doctors quickly suspected something more serious. After several tests, Iman was diagnosed with Wolf-Hirschhorn Syndrome (4P Syndrome) — a rare genetic disorder that affects not only his face, but also severely damages his brain, organs, and physical abilities.

Doctors confirmed that Iman’s brain is severely impaired. He cannot understand anything or make sense of the world around him. His organ functions are also affected. Iman was born with a hole in his heart — though thankfully, it has since healed. However, his kidneys are shrinking and at risk of failure. His airway is weak, and his digestive system doesn’t function normally, so he can only drink milk through a special feeding tube.

At just 2 years old, he underwent surgery to repair his cleft lip. But doctors couldn’t fix his palate because he’s unable to eat like other children.

When he turned 3, his suffering worsened. He began having seizures — not just any seizures, but ones that can last 3 to 4 hours straight and can only be controlled with special medication.

At age 9, he went through another major surgery — this time, to insert a feeding tube into his stomach. At the same time, doctors also had to operate on his testicles twice due to complications.

But Iman’s hardship didn’t end there.

In June last year, his lungs failed. He was hospitalized for 3 months. At first, doctors had little hope because his airway was too weak for him to breathe normally. But by God’s will, a tracheostomy was performed, inserting a breathing tube in his neck to help him breathe.

Though the surgery saved his life, Iman’s world has changed forever.

Ever since he started using the tracheostomy tube, his movement has become very limited. Every day, phlegm clogs his airway and must be suctioned out with a special machine to prevent him from suffocating. Without regular suctioning, the risk of lung infection becomes dangerously high — something that could take his life in an instant.

Because of Iman’s fragile condition, his parents barely sleep. Day and night, they stay alert — ensuring the tube doesn’t clog, protecting him from infections, and watching every breath he takes.

On top of the emotional burden, medical costs are rising fast. Suction machines, feeding tubes, special diapers, medications, and daily needs are expensive. His mother can’t take a full-time job because of the countless hospital visits and treatments.

Kind-hearted souls, Iman needs our help.

Even the smallest contribution means the world to him. Let’s help Iman get the care he needs and live a better life, just like other children!

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