Wan Nian (middle) visits the exhibition of his paintings at his school in Huzhou, East China's Zhejiang province. [Photo/hz66/com]

An exhibition featuring paintings created by Wan Nian, a 17-year-old boy born with a rare genetic disorder, was recently held at a school in Huzhou, East China's Zhejiang province.

Wan's condition is known as Epidermolysis Bullosa, more commonly referred to as EB, which causes blisters after even the mildest trauma, and can also affect the mouth, esophagus, lungs, muscles, eyes, nails and teeth.

Children born with the disease are called Butterfly Babies because their skin is as fragile as a butterfly wing.

Wan Nian was born in Central China's Hunan province in 2005, when EB was little understood in China.

A newborn no medic dares to touch

Wan suffered multiple skin injuries and his oral mucosa fell off due to extrusion during birth.

No medics in the hospital dared to lay a finger on the newborn due to the fragility of his skin, so he was immediately transferred to Hunan Children's Hospital for treatment, where doctors tried a number of experimental therapies, to no avail.

The hospitalization, which lasted 3 months, ate up all of Wan's parents' savings, but they never once considered giving up, even though they had been informed three times that their son was in critical condition during the period.

 "He wants to live!" recalled Wan Lihua, Wan's mother. Wan Nian is the couple's second child, whose name literally means "ten thousand years" in English.

"We gave him this name because no matter what happens, we will love him for forever," Wan Lihua said.

After a short discussion with her husband, Wan Lihua made the decision to take her son home and take care of him herself.

Wan Lihua taught herself about nursing and set up a sterile room at home, but she never stopped seeking medication for her son.

Over the year, they met six other families with an EB child, with whom they established a group chat room to share nursing experiences with each other online.

The chat room has grown from fewer than 10 members to over 1,000.