Many Indonesian media outlets are shining their spotlights on the harrowing story of 11-year-old Muhammad Fahri Asidiq, who suffers from an extremely rare genetic disorder.
Fahri, who lives in Bandung, suffers from a severe case of osteogenesis imperfecta, more commonly known as brittle bone disease.
“If Fahri coughs, it will result in a bone breaking or joint dislocation,” his mother Sri Astati Nursani told Kompas yesterday.
According to her, Fahri began showing signs of osteogenesis imperfecta when he was four years old, when his fragile frame became unable to support his bodyweight. After that, Fahri lost the ability to walk.
Berita Populer Nusantara, Kisah Fidelis hingga Bocah yang Setiap Batuk Tulangnya Patah. https://t.co/NkLHXYWGzz
— Kompas.com (@kompascom) April 6, 2017
Now, Sri said the smallest pressure or impact against his bones could break them. The last she counted, Fahri currently has 6 bone fractures throughout his body.
“If I’m going to carry on like this, I’d rather just die, mom,” Kompas’ reporter Putra Prima Perdana heard Fahri telling his mother.
Sri, a single mother, sells facial tissue around tourism hotspots in Bandung, making around Rp 200,000 (~US$ 15) a day. She uses her earnings to pay for Fahri’s medication and therapy, as well as support their daily lives.
Osteogenesis imperfecta affects about one in 15,000 people worldwide, though most cases are milder than Fahri’s. There is no known cure for osteogenesis imperfecta and sufferers may have to undergo physical therapy for their entire lives.
Organizations such as the US-based Osteogenesis Imperfecta Foundation are receiving donations that go toward cure research among others. Indonesian netizens have expressed interest in setting up a fundraiser for Fahri thanks to the media attention on him. We’ll update this story should there be an official fundraiser for Fahri or other sufferers of osteogenesis imperfecta in Indonesia.
