Iman, 12, Lives With a Rare Genetic Disorder and Depends on Life Support
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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 years old, is not like other children. There’s no joyful laughter, no running around — only a breathing machine and a feeding tube accompany him every day.

Since birth, Iman has faced unimaginable pain. He was born with a cleft lip and palate, and doctors suspected something more serious. After further tests, he was diagnosed with 4P Syndrome Wolf, a very rare genetic disorder. This condition doesn’t just affect his appearance — it damages his brain, organs, and physical development.

Doctors confirmed that Iman’s brain is severely impaired — he cannot understand his surroundings. This also affects his organ functions. His heart had a hole, which was fortunately corrected, but his kidneys are underdeveloped and at risk of failure if not carefully managed. His airways are weak, and his digestive system doesn’t work properly, so he can only drink milk through a special feeding tube.

At age 2, Iman underwent surgery to repair his cleft lip. However, his cleft palate could not be corrected as he could not eat like other children.

By age 3, his suffering worsened as seizures began. And these weren’t ordinary seizures — they could last 3–4 hours without stopping, only controlled with special medication.

At age 9, Iman had another major surgery — a feeding tube was inserted into his stomach because he could not swallow food. At the same time, doctors performed two surgeries on his testes.

But Iman’s struggles didn’t end there.

Last June, his lungs failed, and he was hospitalized for 3 months. At first, doctors gave little hope because his airways were too weak, and he could not breathe normally. By the will of Allah, a tracheostomy was performed, placing a special tube in his neck to help him breathe.

Although the surgery saved his life, Iman’s life changed completely.

Since using the tracheostomy tube, Iman’s movements have become even more limited. Every day, mucus fills his airways and must be suctioned with a machine to prevent breathing difficulties. Without frequent suctioning, the risk of lung infection is high — something that could take his life in an instant.

Because of Iman’s critical condition, his parents hardly sleep. They stay awake day and night, ensuring the tracheostomy tube isn’t blocked, preventing infections, and making sure he can breathe safely.

Medical costs are rising rapidly. Suction machines, feeding tubes, special diapers, medications, and Iman’s daily needs are very expensive. Even worse, his mother cannot work full-time due to numerous hospital appointments and treatments.

Kind-hearted people, Iman needs all of us. Every small contribution can make a huge difference. Let’s help Iman heal and live a healthy life like other children!

 

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