by Khoa Thư 

HÀ NỘI — A phone call to Trần Phương Lan from the National Children’s Hospital four years ago would change her life forever.

Lan was volunteering helping children who suffer from epidermolysis bullosa (EB). This disease affects the skin and causes sufferers to have intense blisters all over their bodies.

Children who are born with the condition are known as ‘butterfly babies’ because their skin is as delicate as a butterfly.

Lan is no medical expert, she is the co-founder of the EB Child Patients Club, and is often the first person people call when they have a new case.

But when she answered her phone to the hospital in 2014, this wasn’t any ordinary case.

A baby had been abandoned at the hospital with what medics thought was the worst case of EB they had ever seen.

“Patients with EB have extremely fragile skin. It blisters and tears from minor friction or trauma,” Lan said.

One in 20,000 children is born with this genetic disease.

Lan, who has been volunteering with sick children for most of her adult life, first became aware of the condition in 2010 when she helped care for a little girl who had the disease.

So moved by the child, she set up the support groups for other parents with children suffering from EB.

But this latest butterfly baby she was helping was different. His parents had abandoned him, and he had no one to look after him.

Then her daughter Tuệ Anh spoke up. “What if our family is a bit wealthy, we can adopt him?” she asked.

Four years later, Nguyễn Hồng Vũ, or Kem as he is affectionately known, is part of the family, sharing their small home on Lê Duẩn Street.

“As a single mum, I bear the full responsibility to take care of my daughter,” the 41-year-old said. “Adopting a child means I have to manage all things on my own, without any support from the family.”

There is no treatment or cure for EB. Daily wound care, pain management and protective bandaging are the only options available.

Every two days, he is washed with saline, applied medicines and wrapped up in bandages. This costs Lan up to VNĐ7 million (US$300) each time.

Two maids are hired to take care of Kem when she is away and his food needs to be nutritious and blended smoothly to reduce pain.

“I want to give my son the best I can have. No matter how hard it is, there is always the way to overcome,” she said.

Lan is so dedicated, she has sold properties to pay for his care.

In 2010, she got to know a girl called Bông suffering the disease at an orphanage in Long Biên District where she volunteered.

In the past 10 years, she has gone to 52 provinces helping parents of other patients.

At present, her club is providing help for more than 30 EB children. Every month, medicine directly imported from Australia, is delivered in to each patient’s door thanks to donations.

“Each patient needs between three to five tubes of medicine and up to ten tubes to the most severe case. Each box costs up to VNĐ8 million ($344), all from people’s donations,” Lan added.

“If I have a wish, it would be a stable donation so that my children can have more bandages and medicine to use. Only good care can help them grow up,” she said.

Her efforts were recognised by Hà Nội People’s Committee. Early this month, she received the title Outstanding Citizen of Hà Nội.

A great honour, but Lan finds inspiration to continue the work she does from elsewhere.

“I love you mum,” Kem said, “much bigger than the sky.”

And that is the only motivation this mum in a million needs to hear. — VNS

* If you want to support children with EB in Việt Nam, log on to the club's Facebook page