In Jiangsu Province, Yancheng City, a baby girl was diagnosed with Epidermolysis Bullosa, a condition where her skin blisters and tears at the slightest touch, commonly known as “Butterfly Baby.” This news made it to the top of Baidu’s trending searches on March 4th.
In a video from “Sanxiang Metro Daily” on March 3rd, a beautiful little girl with a tender voice introduced herself as Chenchengbao. At first glance, the girl seemed no different from other children, but she suffers from Epidermolysis Bullosa, a rare condition with a prevalence of about one in a million, earning her the nickname “Butterfly Baby.”
Her mother explained, “When the child was born, we found that there was no skin on her legs. She was transferred to the neonatal intensive care unit, and the next day, she was diagnosed with inherited Epidermolysis Bullosa.”
The child’s father stated, “Her skin is very fragile, like a butterfly’s wings. It tears at the slightest touch. Because this disease primarily affects children, they are called ‘Butterfly Babies.'”
The mother shared that due to movement, friction on the child’s waist leads to the formation of large blisters almost daily.
As any minor bump or friction can harm the child, her mother’s focus has been solely on the child’s well-being since birth. With no known cure for this condition, symptom relief and pain management rely on daily care, which must be carried out for a lifetime.
According to CCTV News Client, the child’s mother, Gu Yi, revealed that as the child has grown older, she has learned to protect herself, resulting in a relatively improved condition. The frequency of changing dressings now varies between a couple of hours or even just over an hour if done quickly.
Financially, the biggest pressure on this family stems from the medical expenses. Gu Yi mentioned that the monthly expenditure for the child’s treatment amounts to around 5,000 to 6,000 RMB, with dressing costs comprising the majority. Dressings are not covered by medical insurance and are quite expensive, ranging from three to four hundred to four to five hundred RMB each.
With a combined monthly income of 8,000 RMB, Gu Yi and her husband allocate 5,000 RMB towards their child’s care, putting a significant strain on their household finances.
CCTV News Client stated that many Epidermolysis Bullosa patients face similar challenges with the lack of effective treatments, relying on various dressings for wound care, which is time-consuming and labor-intensive. Depending on the severity of the skin damage, procedures like debridement, dressing changes, and bandaging can take anywhere from 2 to 4 hours.
In the video from “Sanxiang Metro Daily,” Chenchengbao played happily at home, wearing gloves to protect her hands.
A netizen named “Garfield Cat Rain” commented, “This is the first time I’ve heard of this disease. I hope the baby gets better soon.”