Our Butterfly Baby

There is a group of children referred to as “butterfly children”. It’s not because they look like a butterfly, instead, it is because their skin is as delicate and fragile as butterfly wings. What exactly does this mean?

This group of children are born with a rare genetic disorder characterized by the development of blisters following minimal pressure to the skin. The medical term for this group of skin diseases is epidermolysis bullosa (EB). Blistering can happen when a child is simply held or handled. There is no cure for this inherited disorder but treatment focuses on prevention and treatment of wounds.

On top of this challenging condition, what if a child also is born with a heart defect? We know such a boy and today we would like to share his story. His name is Ping.

In 2018, right after Chinese New Year, Dew Drops received a phone call from an orphanage. They had a little boy who had some kind of skin problem and they needed help taking care of him. After 10 long hours of travel, we were able to bring this sweet boy to Beijing for further medical consultations. The doctors confirmed our suspicion that he had EB and also diagnosed him with a congenital heart defect (VSD). When we went and picked up Ping, we were ready to take care of him. We were ready to treat his wounds, hold him carefully and love him a lot. But now, an unexpected challenge had risen. How can a boy with EB have heart surgery? How can he recover from surgery with ventilators, post-operative monitoring systems and IV’s attached to him? But if we didn’t provide him with this surgery, his heart would continue to decline and eventually would stop…..

We had only one obvious answer to this complicated situation – we had to find a way to provide Ping with life-saving heart surgery while taking care of his skin. And so the preparation started. We started collecting special supplies to be used during the surgery and post-operative care. We also contacted a team of doctors who are experienced in providing care to children with EB and heart defects. And we focused on Ping’s growth so he would get bigger and stronger for surgery.

After 5 months of preparation, the day has finally come. We are headed to the hospital with a suitcase full of supplies, a team of medical doctors and nurses ready to tackle this surgery and concerned supporters all around the world sending this sweet boy many best wishes! Today, we are tackling this challenging situation head on and giving Ping a chance to live.


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