Butterfly Boy

We'd like to share the story of P, who was abandoned 8 years ago in a province in eastern China.  Recognizing that he had a very rare and complex combination of medical issues, his orphanage asked if we could help.  

Little P was diagnosed with EB (epidermolysis bullosa, or “butterfly skin”) as well as a congenital heart defect.  P’s heart surgery was very challenging because of his skin issues, but we were able consult with experts abroad who provided guidance and recommendations, and everything went smoothly.

Because P’s orphanage is unable to provide the high level of special nursing care that he needs on an ongoing basis, they have allowed him to remain in our medical home for the past 8 years.  Unfortunately, it’s not possible for him to attend a regular school.  We have been working hard to provide him with a basic education and diverse opportunities to experience the world as other children do, despite the limitations of his medical issues.  

P loves to go on outings, even very ordinary ones like going to the store and helping with the shopping.  He is a very smart little boy who loves to ask questions and give advice.  

We are blessed to have groups of volunteers visit regularly; P is always delighted to welcome them in and direct the games and craft activities planned for the day.  

One of his favorite things to do is build very tall towers with Duplo’s, and he loves everything Paw Patrol!  

He’s often a bit shy at first, but once he gets to know you, he can be very silly and has a lot to say!  It’s not an exaggeration to say that P has left a mark on the heart of every person who has ever met him.

We are grateful to all who have made it possible for us to provide P with love, nurturing and life-saving medical treatment.  While we don’t know what the future holds for P, we are privileged to be a part of his story.