Jing was 16 months old, just weeks ahead of playing make believe, running, jumping, and exploring. Only those developmental milestones she was on target for reaching, had to be delayed. The course of her life was about to make a detour that would alter her journey for a very long time.

Jing was born to parents who lived in a rural village of southwest China where central electricity and modern plumbing were unavailable. Meals were cooked over an open fire, that one fateful day burned much of the newly mobile infant’s body. By the time Jing celebrated her second birthday, she had already undergone three surgeries.

Her story traveled to the United States via the media and internet, and eventually led her to Cincinnati, one week past her second birthday in 2012, where she has been living with a host family and receiving treatment from Shriner’s Hospital for Children – Cincinnati.

Her injuries caused airway obstruction which made it difficult to stay asleep for longer than 90 minutes at a time.  She had lost vision in one eye, and the Chinese hospital had fused the lid.  Jing’s mouth was so contracted from scar tissue that she could only consume bottles of formula.  Over the next year, Kevin Yakuboff M.D., FACS, FAAPS, surgically released Jing’s mouth and neck, which allowed her to enjoy solid food for the first time.  (Meatballs were a favorite!)  He corrected her eyelid for a more symmetric and balanced appearance.   By her third birthday, Christopher Gordon M.D., FACS, FAAP surgically altered her jaw, a major advancement which opened her airways and allowed her to sleep through the night for the first time.

An ocean separating them, when it had become clear that it was in Jing’s best interest to stay in Cincinnati near to her medical team, her parents wanted that for their daughter, and Jing’s host family became her adopted family.

Enter Portrait of a Soul

It is children like Jing who give Cincinnati philanthropists Lee and Sue Schaefer purpose. Four years ago they founded Portrait of a Soul, a nonprofit organization which partners with elite artists to create beautiful, fine art portraits of children with craniofacial conditions or other differences.

“For a child, having a portrait of him or herself, tells them ‘you matter, you are important’,” Lee told me. “We had a little girl who looked at her portrait and said she couldn’t believe an artist touched that portrait 100,000 times just for her. Most of the kids want their scar showing but don’t always have to. We just want it to be a positive, uplifting experience for them. The fact that someone cares about them is what they walk away with.”

The first step is meeting with the artist to make sure he/she has a “heart for the project and the child”, something top on the Schaefer’s priority list. Once artists have been paired with a child, they meet and typically the artist will take a lot of photos before going into the studio to illustrate their interpretation of their subject’s soul. Children do not see the finished result until an unveiling event – usually some 4 to 6 months later. It is a process that forms special bonds. Lee and Sue, who have no children of their own, have been to numerous high school graduations, birth parties, plays and other celebrations.

Holly Schapker painted two portraits, one of which was just unveiled at the Down Syndrome Association of Greater Cincinnati. “It is interesting that for so many years, I have been building my skillset and it feels like all my skills have been for this purpose. I don’t see a higher purpose as an artist,” she told me.

Jing loves art and reading, and panda bears. And, now, after the unveiling of her portrait by Tracey Ellis-Haynes at Shriner’s Hospital, the world will know that too (as a high quality reproduction will hang at Shriner’s Hospital and Jing has the original). “I love it because it has my stuffed panda, Xi Xi, in it. Then everybody can see her. I am proud because my artist did a great job,” she told me.

I asked Lee how their nonprofit has impacted him and his wife. “We are very humbled by it,” he said. We don’t want the project to be about Sue and me. This is our way of giving back. We have gotten more out of it than we ever thought. It is the neatest thing that we have ever done.”