This is the second foreign family to have asked the hospital to treat their children with EB in only two weeks.
Dr. Liem said the hospital has performed cardiac surgeries for Laos patients and provided the expat community in Vietnam with medical check-ups but has never received overseas patients.
In late April, the hospital received a letter from Gabriel Bontas, a Romanian, who wanted his 10 month-old baby diagnosed with EB to be treated at the hospital since Vietnam is currently the second country in the world after the US to have successfully treated the rare disease.
In his reply to the Romanian father, Dr. Liem explained that it is possible to cure the baby by transplanting stem cells but since Emanual Bontas, the baby’s name, has no siblings, there is no source of stem cell for transplant.
The hospital thus advised the family to have another baby to collect cells from umbilical cord for treatment or contact an umbilical cord blood stem cells bank in Europe for transplant purposes.
“There is no precedent for treating patients from abroad in Vietnam, so we will ask for permission from the Ministry of Health,” Liem said.
EB is a rare inherited connective tissue disease causing blisters in the skin and mucosal membranes. The patients’ skin is extremely fragile as minor mechanical friction or trauma can separate the layers of the skin and form blisters.
In 2011, the National Hospital of Pediatrics successfully used stem cell transplant to treat EB for Nguyen Viet Anh, a five-year-old Vietnamese boy from the northern province of Vinh Phuc.
In Vietnam, the treatment cost for EB is around US$40,000 while it may cost up to millions of dollars in the US.