Hanoi’s mum brings hope to children with epidermolysis bullosa

(VOVWORLD) - Tran Phuong Lan, founder and head of the “baby with epidermolysis bullosa (EB)” club in Hoan Kiem district, has been recognized as one of the 10 most outstanding citizens of Hanoi in 2018. Lan first adopted a boy affected with EB and then became a sponsor for dozens of other EB patients.

Hanoi’s mum brings hope to children with epidermolysis bullosa - ảnh 1

Tran Phuong Lan was born in 1977 in Ha Nam province. She experienced an unhappy marriage and soon divorced. Lan lives a single life raising her daughter and an adopted boy who has EB, an incurable disease. EB is a rare disease that causes fragile, blistering skin. A child affected with EB suffers from red, painful, swollen skin and without special treatment will die. Lan said: “In 2010, I got to know by chance a girl affected with EB called Bong. She was abandoned at Bo De pagoda. Bong has a beautiful face, so I opened a fanpage to post her picture, then I had the idea to set up an EB club. I brought Bong home and found  a remedy to treat her disease”.

It costs a lot of money, tens of thousands of USD per year to treat an EB patient. Lan took various jobs to earn money to support patients with EB. Since its establishment, the EB club has saved many children.

“The EB club has 3 members including two of my friends. I contribute 50 percent to the club’s budget and raise another 50 percent from relatives, friends, and organizations. Our club is now supporting 33 EB children. I have traveled to 52 cities and provinces in Vietnam to support EB patients by providing them with treatment and medicine,” Lan elaborated.

Lan adopted a boy named Nguyen Hong Vu, who suffers from EB and was abandoned when he was born. At first, Vu was expected to die within a few months, but with Lan’s special care over over the past 4 years, his health has greatly improved. 

Can you tell me what my name is?

-Your name is Lan. My name is Kem.

How much do you love me?

-I love you the most. You’re everything to me.

Lan’s special love for Vu, aka Kem, moves her neighbors. Many have volunteered to help. Lan said: “I spent a lot of money on medicine and bandages for Kem. In 2016, he was hospitalized 3 times. I sold 2 houses to pay the hospital fee. Now, life is very hard for me, but I do my best to help him”.

Thanks to the support of Lan and her club, many children with EB have found hope in life and many of them now go to school.