This Father's Day, DEBRA Hong Kong is honoured to share the story of Elliott’s father. 

After Elliott was born, his father sensed something wasn't right. Elliott was quickly taken to a separate area of the hospital to be examined more closely. The doctors found large wounds on his legs which shouldn't have been there.

The family was rushed to a public hospital. There, doctors recognised the signs immediately, and after a few tests, they confirmed it was Epidermolysis Bullosa (EB). EB is a rare genetic disease where the skin blisters and tears with the slightest touch. In the blink of an eye, Elliot’s father's world changed forever.

Day in the Life as a Caregiver

Caring for a child with EB means building a daily routine around careful attention to fragile skin. For Elliott’s father, every day includes:

• Morning check-ins: starting the day by talking with his son about what's ahead

• Shower time for Elliott: done with extra care to protect delicate skin

• Afternoon dressing changes: a careful, time-consuming process that requires patience

• Managing supplies: organising bandages and medications to keep everything ready

• Mealtimes: preparing food that's safe and comfortable for Elliott to eat

Caregiving can be all-consuming, and Elliott’s father knows the importance of looking after himself too. His advice to EB parents is simple but powerful: rest when you can, and treat yourself with the same compassion you give your child.
 

A Message of Hope

We asked Elliott’s father what he would say to other fathers or parents who are just beginning this journey of caring for a child with EB:

“Don't give up hope. There is so much happening in EB research and science right now. EB kids are incredibly resilient, and every single EB life is precious.”

A Father's Day Wish

If he could ask one thing of Hong Kong's healthcare system, it would be that EB patients have free access to the specialised, non-adherent bandages they rely on every day. Just as patients with other chronic conditions receive ongoing support for their care.

This Father's Day, Debra Hong Kong celebrates all the fathers who show up every single day for their children with EB. To all our EB dads: thank you, and happy Father's Day.

If you are a parent of a child recently diagnosed with EB and would like support, please reach out to DEBRA Hong Kong. You are not alone.

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.