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  Life   Health  30 Jan 2018  Boy with butterfly disease refuses life-saving treatment as he is afraid he won't survive

Boy with butterfly disease refuses life-saving treatment as he is afraid he won't survive

THE ASIAN AGE
Published : Jan 30, 2018, 1:12 pm IST
Updated : Jan 30, 2018, 1:12 pm IST

The disorder causes his skin to fall apart from within and the boy isn’t expected to live beyond the age of 30.

His fear comes after a routine operation that left him battling for his life (Photo: YouTube)
 His fear comes after a routine operation that left him battling for his life (Photo: YouTube)

Life can be a struggle for people suffering from rare conditions as has been seen in many shocking cases across the globe. But can someone actually refuse life-saving treatment for such a painful ordeal?

17-year-old Jonathan Gionfriddo has been battling excruciating pain every day due to a condition dubbed the ‘butterfly disease’. The disorder causes his skin to fall apart from within and the boy isn’t expected to live beyond the age of 30.

The teenager says that while he is fragile outside, he is also weak inside as the ordeal is a mental and physical torture. But as doctors urge him to undergo a new treatment that helped another patient, Jonathan is refusing since he is afraid he won’t survive.

His fear comes after a routine operation that left him battling for his life. Jonathan said that they couldn’t get the breathing tube down his throat and his lung collapsed and his other lung collapsed as they tried to get him up.

The near death experience has made the boy refuse the treatment which involves risk to his life even though it can help improve his condition.

Tags: health, rare disorder, butterfly disease