After several IVF treatments, the first time Wudy saw her newborn daughter, she was wrapped in bandages, with only a sliver of her face visible. Before anyone had explained what was happening, doctors had already taken the baby to the NICU. Wudy lay there on the hospital bed, trying to make sense of what she was seeing. The little face peeking out from layers of white, the strange stillness of a moment that should have been joyful.

What Wudy didn't yet know was that this was Epidermolysis Bullosa (EB), a rare genetic condition that causes the skin to blister and tear at the slightest friction or pressure. And she has spent the past seven years learning what it means to love someone whose skin is as fragile as a butterfly's wing.

Meet Wudy’s daughter, Yan Lam

Yan Lam has EB Simplex, one of three main types of EB. Her case within that subgroup is very severe. She goes to a local school, and despite her condition, she loves hanging on the monkey bars in the playground.

The more she runs and plays, the more blisters appear on her feet. Wudy also describes how she has also developed something of a self-protective instinct. She is very afraid of being knocked over or accidental contact with others. Her body has taught her caution in a way that most seven-year-olds never have to learn.

Daily Routines

Every evening after work, Wudy helps Yan Lam change her bandages. This process takes one to three hours. Blisters must be carefully popped and drained. Fresh dressings must be applied, tight enough to protect the skin from infection but never so tight as to cause damage. It is a paradox that Yan Lam and her parents navigate every day.

Infections can be fatal. Fevers are dreaded. A trip to the emergency room is a source of anxiety, with long waits in rooms full of other people's germs, her daughter’s skin too fragile to risk exposure.

Beyond the Medical Challenges

There are the medical challenges. And then there are others.

Strangers have stared. Some have taken photographs without asking. There have been people who looked at the bandages and assumed that her daughter had been abused. Wudy has had to put up with their ignorance and lack of compassion while keeping her composure for her daughter's sake.

Even within her own family, traditional beliefs cast a long shadow. Some relatives suggested that she must have eaten the wrong things during pregnancy, or done something wrong ‘in her past life’. The grief of watching your child suffer exacerbated the additional weight of being blamed for it.

Finding Debra Hong Kong

It was a nurse who first connected Wudy with another EB mother, who then connected her with others part of the EB community. Through Debra Hong Kong, Wudy found others who understood without needing things explained. She received words of comfort from people who had walked a version of the same road. In time, she began helping Debra Hong Kong in radio interviews and offering emotional support to other EB families as a social worker.

What keeps her going

For Wudy, her Christian faith, friends, house maid Devi and her husband’s support has carried her through the hardest stretches. So has the support of family members who showed up and stayed. When asked about the biggest challenges she faced, she remembers how when her daughter was around three or four, she began expressing her emotions more strongly. This meant Wudy had to push aside her emotions, as she thought to herself that her tears would blur her vision, which meant she could accidentally hurt her daughter as she was draining her blisters. 

Her wish for Butterfly Mums

We asked Wudy what she wanted to say to other Butterfly Mums or Parents this Mother’s Day. 

“I would say to all EB parents that we are all very courageous. Seeing your own child full of blisters, feeling so helpless and then pushing that aside to help them and be with them… that takes immense determination and love. On this Mother’s Day, I want to give all EB parents a hug. Thank you for your strength and resilience and may we journey in this together!”

She thinks about how we complain about the blisters we get from a pair of new shoes. For her daughter, and for every child with EB, that pain is every day, for the rest of their lives.

To every Butterfly Mum this Mother's Day: you are seen. What you do is extraordinary, even when it feels like simply getting through another morning. The courage it takes to care for a child in perpetual pain is not ordinary.

It is love at its most demanding, and its most beautiful.

Help us stand beside families like Wudy's, today and every day.

Debra Hong Kong supports individuals and families living with Epidermolysis Bullosa, providing community, resources and aid for those navigating life with this rare and painful condition. Every donation helps us help more Butterfly families across Hong Kong.