When Song Liuchen was born, he cried non-stop for 12 hours at the pain of being touched. Now 8 years old, he’s beating the odds while suffering from a rare condition that leaves his skin as fragile as a butterfly’s wing.
Liuchen suffers from epidermolysis bullosa (EB), an extremely rare inherited condition, Central European News (CEN) reported. For EB children, every touch causes pain. Liuchen has a particularly rare form of EB that leaves his skin fragile and easily broken and it frequently flakes away. The condition was first bought into the public eye through a 2004 UK documentary, The Boy Whose Skin Fell Off, about the life and death of Jonny Kennedy.
Song’s parents were told upon his diagnosis as a newborn, that their son would not live long and were given his death certificate when they were sent away from the hospital. Specialists at the Zhengzhou hospital told them the condition was so rare, they did not even know how to treat it.
"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,” his father, Song Zhongmin, 43, told CEN. “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."
For Zhongmin and his wife, Wang Xiaying, 39, their son’s bravery has encouraged them to stay optimistic. Liuchen attends a regular school and is one of the top students in his second grade class.
Winter is the best season for the boy, while his condition worsens in the summer. His mother must change his bed sheets daily because of the blood and liquid from his wounds.
“His fingers are often stuck together, and he doesn't even have any fingernails as they have fallen off,” Xiaying told CEN.
Unfortunately, his condition is worsening. The medicines and treatments have taken a toll on his health and he is no longer able to eat even rice.
"I try to be strong for his sake but sometimes I just have to find a quiet place and cry,” his mother told CEN. “It just gets all too much but I don't want him to see me sad.”