JACKSONVILLE, Fla. — At the tender age of 5-years-old, Jianfeng has traveled to the other side of the world. As a Chinese orphan he has seen a harsh reality, but the kindness of strangers, too.
Kindness from people like Jacksonville's Ken and Shelley DeVault. Volunteers with Grace & Hope For Children, they help get children in China out of orphanages and into foster homes in that country. Jianfeng's case caught their eye when he was turned over to an orphanage by his parents as an infant.
"The name of the disorder is Apert Syndrome and it effects about 1 in 60,000 children," explains Shelley DeVault.
With Apert Syndrome, Jianfeng's skull fused together early causing pressure on his brain as well as head and facial deformities. His fingers and toes were also fused together. Yet all of that never stopped him from being a happy, little boy until last October.
"In October he wrote he was very sad because he was old enough to go to Kindergarten, but because of his appearance he wasn't able to go," tells Shelley.
For years, Grace & Hope For Children and the DeVaults had tried to get Jianfeng medical help, but when they got that last update they knew they needed to get him help soon. Then help came from the hospitals in their own backyard.
"Dr. Aubin at Wolfson gave permission for it and because of that everybody came together," describes Shelley.
Officials in China allowed Jianfeng to come to America for help, but told the DeVaults he could not stay here. Once the surgeries were done, he must be returned to China. So on a January morning Jianfeng arrived in Jacksonville with Xiao Xiao, the head of Grace & Hope For Children, and the surgeries began.
First up was a surgery to fix the skull plates that had fused together in his head.
"Not only to create a more normal appearance of his skull and orbital bones, but also to allow for more normal brain development," explains Dr. Nathan Ranalli, a pediatric neurosurgeon with UF Health Jacksonville and working at Wolfson Children's Hospital.
Dr. Ranalli and Dr. Barry Steinberg spent hours in surgery reconstructing Jianfeng's skull. A tough surgery for such a young boy, but he made it through and within 48 hours was up, playing with an iPad and bouncing back to his normal self.
It was a surgery he would not have gotten in China, done pro bono here in Jacksonville out of kindness.
"You can't pay for that and you can't get paid for that with money, this is the biggest reward," says Dr. Barry Steinberg, an oral and maxillofacial surgeon.
But as Jianfeng heals, he has to say goodbye. The clock is ticking to get him back to China. With less than 24 hours to go before his flight, Shelley and Xiao take Jianfeng to his final appointment at Nemours Children's Specialty Care. Dr. Peter Murray had separated Jianfeng's fused fingers and his casts were finally coming off!
The DeVault's and Xiao had told Jianfeng his hands would be different than what he remembered. Tears began to roll down his cheeks as the casts came off because change can be a scary thing for a 5-year-old. But the tears quickly dried and then came a look of amazement as Jianfeng stared at his fingers.
"He will have to reprocess how to use his hands now that it is different," explains Dr. Peter Murray with the Mayo Clinic.
In just two short months, Jianfeng's journey to Jacksonville has changed the course of his life and touched the hearts of people he has met along the way.
"The community of Jacksonville came together to help this little boy that nobody knew. It was doctors from the Mayo Clinic, UF Health, Baptist, Nemours, Wolfson, private practice dentists and everybody came together to help this child and he has just blossomed," says Shelley with a smile.
A community of people overflowing with love to help Jianfeng, but knew a good-bye was on the horizon. On a dark April morning at Jacksonville International Airport, that moment arrived.
"Come here and give me a hug, I need a hug. I love you," Shelley says to Jianfeng as she hugs him good-bye.
"Be good little fella, you be good," says Ken DeVault as he reaches down to give Jianfeng a hug.
The DeVaults say little Jianfeng will always have a place in their hearts.
"It was a blessing to be able to do it, but we've been blessed too," says Shelley.
Jianfeng's story is as much about him as it is about the open hearts of the DeVaults and countless doctors and nurses. People who saw a need and an opportunity to change one little boy's life.
"He is up for the adventure, ready for the next thing," Shelley says as she waves good-bye to Jianfeng and Xiao Xiao.
Though he has to return to China, Jianfeng's story isn't over. The DeVaults say there is a family in Washington state that wants to adopt him. They are working to get his adoption paperwork expedited for medical reasons. As soon as that is approved, the family will go to China to bring him back to the USA permanently.
Also, the family in Washington will change his name to Caleb and he will have two big sisters.
For more information on Grace & Hope For Children, follow the link here: https://www.grace-hope.org/