A young girl with a rare inherited tissue disease is virtually alone, her father having left and her mother suffering mental illness, with only her grandmother left to watch over her.

Tran Huyen Nghi, 11, in Can Tho City has had epidermolysis bullosa, a connective tissue disease that causes blisters in the skin and mucosal membranes. since birth. Young patients with the disease are often called "Butterfly Children", because their skin is as fragile as a butterfly's wings. It has an incidence of about 50 in a million.

Nghi's skin peeling away

She was first treated at HCM City Hospital of Pediatric 2, but the family returned home after only two weeks because they could not afford the complex treatment, which involves gene therapy to change the keratins in the skin.

Nguyen Thi Be Nam, Nghi's grandmother, said, "I don't know where my son-in-law is living now. Nghi's mother fell ill and suffers from mental illness. She wanders alone all day and eats whatever she is given."

Nghi's skin often dries up and peels away in large patches, resulting in high fevers and considerable pain.

Tran Huyen Nghi

"Even the skin on her tongue is affected. The process lasts about 2 months before another cycle starts. I can only take her to hospital when the peeling is too severe because we cannot afford it," Nam said.

Nghi's skin becomes very thin and she cannot cope with heat or cold. She cannot go to school because other parents fear the illness will infect classmates.

Doctors have no cure. US experiments suggest bone marrow transplant may be effective, but the risk is extremely high and there is as yet no conclusive proof.

She keeps Nghi with her while she sells lottery tickets because no one else will look after her while she is working.

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