Butterfly Boy: 8-Year-Old Beats All Odds By Living With Horrific Disease That Causes Skin To Fall Off In Sleep

Song Liuchen

When Song Liuchen was born, his parents were told that the baby had little hope of survival and sent the devastated parents home with a death certificate. However, Liuchen is now 8-years-old and has beat all odds, as he lives with a horrifying and painful disease that causes his skin to fall off at the slightest touch. The boy has managed to push through the pain and currently attends a regular school and is top of his class.

According to Fox News, Liuchen suffers from epidermolysis bullosa (EB), an extremely rare inherited medical condition. Liuchen’s EB is particularly rare and causes his skin to be excessively fragile. His skin will completely flake away at even the slightest touch. This makes everyday tasks, such as getting dressed, extremely painful and potentially life-threatening for the boy.

Unfortunately for Liuchen’s parents, the medical community in China were unable to provide any relief. The hospital told the family that the condition was so exceedingly rare that they don’t even know how to treat it. Therefore, the family was left on their own to deal with the devastating disease.

“To be honest most of the doctors we’ve spoken to have not been able to help, and we have tried numerous folk recipes and none of those help either. The only thing that has helped is lots of patience and care from my wife and myself. We have learned slowly to find ways of making his life easier, although he still has a great deal of pain and it is constant, when he sleeps, when he wakes, whatever he does.”

The Mirror reports that Liuchen cried for the first full 12 hours of his life at the pain of being touched, something most newborns crave. For Liuchen, a simple touch would cause his fragile skin to flake away. Despite the trials the family faced early on, Liuchen’s parents were determined to care for their son in any way possible. It seems their care has paid off, as Liuchen has defied all odds and the death certificate was never used. The parents say their son encourages them to never give up.

Not only is Liuchen still alive, he is thriving in school. His parents note that Liuchen is top of his class in the second grade. Though their son is doing well in school, his life is very difficult. He is in constant pain and his parents worry about his future. They noted that medical treatments are hard on Liuchen and at one point he was unable to even eat rice.

Unfortunately, the boy’s condition is only getting worse. Liuchen’s mom notes that she has to change the boy’s sheets everyday as they are “always covered in blood and liquid from his wounds.”

Though many people die in infancy after being diagnosed with epidermolysis bullosa (EB), there are cases of sufferers living well into adulthood. Amy O’Neill is one such example. Amy lived to the age of 54 and was even a college graduate.

The condition was brought to the public’s attention back in 2004 when a documentary called The Boy Whose Skin Fell Off aired in the U.K. The documentary followed the life and death of Jonny Kennedy, who suffered from the condition.