Children of China Pediatrics Foundation: Raising the Bar on Disability Awareness and Philanthropy

After being left alone on a Chinese street and then spending years in an orphanage in Henan Province, Jackson, an eight-year-old born with a spinal deformity, experienced being a member of a family in 2015 for the first time. His adoptive parents, Shanghai-based Australians Maurita and Terence, took him home while anxiously waiting for his first big surgery.

The medical procedure, which was initiated and organized by the Children of China Pediatrics Foundation (CCPF), was designed to free Jackson from outdated contraptions that he was tethered to while sitting in his wheelchair every day.

Before CCPF stepped in with an A-list medical team from New York to help transform Jackson’s life, the treatment plan provided by local doctors had failed Jackson so miserably that one side of his lungs had collapsed.

Distressed by Jackson’s deteriorating condition, Maurita and Terence decided to put the little boy in the hands of CCPF, which they believed “had the right people, experience, and expertise” to correct Jackson’s birth deformity. “Time was working against him at that point,” Terence said. “But we totally trusted the team and became less and less nervous in the days leading up to the surgery because they were amazing and fantastic.”

On October 31, 2016, Jackson completed his first round of surgery, which lasted an excruciating nine hours. In 2017, he received the second part of major surgery. After a series of further adjustment procedures that started last year, Jackson has entered a brand-new stage of his life. He is now back in school and even picked up swimming under the coaching of his adoptive father.

Speaking of CCPF’s critical role in Jackson’s surgery and recovery, the grateful parents said that the organization was really making a difference for kids coming from vulnerable and poor areas in China. “They are getting that amazing level of experience and expertise the way that people are getting in the U.S., in New York specifically,” Terence said. “And the ongoing support from it is what really made CCPF stand out from other organizations. They are building a community here, where we get to see other children grow up and share experiences together.”

A beautiful start in Nanjing

Nanjing, the capital of eastern China’s Jiangsu Province, is where the fascinating story started. Back in 1995, Gena Palumbo, then a counsel at an international law firm, made a trip to an orphanage in the city, where she adopted a daughter who she named Alison. Profoundly inspired by the life-changing experience, Gena decided to give back by founding CCPF, which is dedicated to her primary goal of improving the lives of Chinese orphans with disabilities through medical intervention.

When talking to The China Project, Gena says that part of her motivation was her gratitude for her family. And while her two daughters, both of whom were adopted, were born without disabilities, she was well aware of the fact that “there were many children who were left in orphanages and who were not as lucky as others.”

Politics also played a positive role in her decision to establish CCPF. “In 1995, it was clear that the relationship between China and the U.S. was very important,” Gena says, adding that helping to advance U.S.-China relations was one of her key objectives along the way. “As an American citizen, I thought working with Chinese medical professionals could help improve the welfare of these children as well as form important international relations.”

For Gena, who had no prior connection to China and limited knowledge of philanthropic work before her adoption of Alison, her challenging journey to founding and growing CCPF was nothing short of extraordinary. In fact, in the 1990s, when global nonprofit groups just started becoming an important vehicle for delivering foreign aid, no other medical NGO had even made an attempt to help disabled orphans the way CCPF did. Moreover, given the high level of uncertainty in Sino-U.S. relations at that time, Gena’s vision for CCPF was even more groundbreaking and awe-inspiring.

Fortunately, despite all the obstacles she was facing, Gena went back to China in 1998 with a team of world-renowned pediatric surgeons, which officially marked the first medical mission trip for CCPF. Since then, the organization has diligently provided free surgeries and rehabilitation treatments for more than 1,000 orphans and children from families in need from 15 provinces across China.

With the tremendous success of CCPF, Gena’s efforts have paid off. Reflecting on the more than 20 years she has dedicated to CCPF, she marvels at how everything has changed in China.  Noting that China has developed into a strong and powerful presence in the world, Gena says she’s happy to see the country spending more medical resources and thinking about how to take better care of disabled children in orphanages.

When it comes to how China’s increasing emphasis on these children affected the scope of CCPF’s work, Gena says that the group is now focusing much more on specialized surgeries and difficult cases that Chinese medical professionals and their American counterpart can work on together. According to her, the rise of the Chinese public’s awareness about these children has presented an unprecedented opportunity for her and her organization. “The desire of Chinese people to do as much as they can to help these children is impressive,” Gena says, adding that this is a general observation she made in her recent trips to the country.

As a career woman who currently serves as managing director at Goldman, Sachs & Co., Gena also has a message for other compassionate female professionals like her, who want to make a difference and give back by engaging in charitable activities outside their jobs. On balancing her professional responsibilities and personal commitment to CCPF, Gena believes that people can always find a way to make time for things they are truly passionate about. “The only way to manage competing priorities is to be highly organized, driven, and willing to ask others for help — both on the professional and personal side,” she says. “It also helps to be passionately committed to both sets of responsibility.”

CCPF’s impact

Under Gena’s leadership, in the span of more than 20 years since its establishment, CCPF achieved numerous milestones through its unique and diverse programs, which, first and foremost, include surgical mission trips that have been approved by China’s Ministry of Civil Affairs and the Ministry of Public Health after years-long efforts. Each year, CCPF recruits two all-volunteer and multi-specialty teams of pediatric specialists from the U.S. to fly to China and perform complex procedures on patients selected from Chinese orphanages. In some cases, it also brings Chinese children to hospitals in the U.S. for the more complicated treatments. The cost of one surgery, which is around US$3,000, comes from donors.

Dr. Brian Coakley, a New York–based pediatric oncology surgery specialist who participated in his first CCPF trip to Shenzhen last November, said that it was a touching and fulfilling experience. During his six-day visit, Coakley completed six highly complex surgeries and provided training for the local medical staff. “I had nothing but phenomenal things to say about the organization,” he said. “There was a beautiful interplay between the local team’s dedication to taking care of these children and the expertise that we tried to convert from our experience in the U.S.”

In 2012, CCPF launched a rehabilitation program, which was designed to let more patients benefit from non-surgical treatments and cost around $1,000 for a child. As part of the program, CCPF organizes teams of physiatrists, physical, occupational, and speech therapists, and orthotists to help kids with nonoperable chronic conditions to learn how to walk, swallow, and play while helping relieve them of extreme pain and discomfort.

Dr. Heakyung Kim, a program director of pediatric rehabilitation medicine at Columbia University Medical Center, joined CCPF in 2011 and has been on 10 mission trips as the head of its rehab program. During her time in China, she met children in need at orphanages in cities like Nanjing, Shenzhen, and Chengdu, gave lectures to local staff, and provided hands-on training to make sure the kids would be taken good care of before her team visited them again to assess the results.

“I truly believe that my work is to give a different perspective of life to these children. I helped them to find their talents and fulfill their potential,” Dr. Kim said, adding that by making education an equally important focus of the mission trips, CCPF’s work also benefits caregivers and foster parents in Chinese orphanages, which largely increases the long-term impact of its rehab program.

Over the years, CCPF also has expanded its vision to include a fellowship program at Columbia University in New York for Chinese medical professionals, which facilitates ongoing support and medical attention for the patients in China.

Echoing Maurita and Terence’s praise of CCPF’s long-term commitment, Dr. Brian Coakley pointed out that a tremendous component of CCPF’s vision is the exchange of ideas and techniques between American and Chinese surgeons. “They actually learn your techniques and approach, which they can apply to their future patients. And that’s what makes a longer lasting impact,” Coakley said. CCPF’s persistence in its mission also serves a huge draw for Dr. Kim, who applauded the organization for the tremendous amount of work it has done to bring positive changes to the children’s’ lives. “Its goal never changed,” Dr. Kim said. “And that’s what I found most impressive about CCPF.”

CCPF’s excellent work has received global recognition. In 2016, it was awarded United Nations Special Consultative Status, a high-profile honor that is selectively granted to non-governmental organizations that have a special competence in helping people in need in a specific field.

It also enjoys a long list of accolades from philanthropists all over the world, but what stands at the core of its philosophy is its unwavering determination to improve the day-to-day quality of life for disabled children, as well as increase the likelihood of orphans being adopted. The original goal is more relevant than ever before, given the number of children born with disabilities continues to rise at an alarming rate in China, which makes CCPF’s responsibilities even more vital.

According to a report released by China’s Ministry of Health in 2012, between 800,000 and 1.2 million Chinese babies were born with disabilities every year. Meanwhile, it is reported that in the last 20 years, the number of children with birth defects has skyrocketed by 70 percent due to an array of reasons such as environmental pollution, including poor air quality, and contaminated food. The gut-wrenching reality is that many of these disabled children are abandoned by their parents due to poverty and stigma, and they often end up in orphanages without proper medical care or a feeling of family.

On the other hand, there are families who do keep their children with disabilities, even if they do not have the means to provide proper medical care. The attitude toward disabilities is slowly changing. Growing simultaneously with this changing situation, CCPF has expanded its reach to offer free medical help to these families in need as well. As demand for CCPF’s work expands, so does its need for more volunteer pediatric surgeons and more donations.

The organization is very proud to say its work is far-reaching, tangible, and expediential. For donors and people searching for a reputable charity to donate to, CCPF’s well-established and meaningful impact is a strong endorsement. Furthermore, CCPF supervises and administers all of its funds. This additional layer of  professionalism instills even more confidence in everyone who supports its mission.

Interested in donating or volunteering?

To learn more about CCPF, follow its stories on its website and on Instagram. CCPF is a registered nonprofit 501(c)(3) organization and donations may be tax-deductible. To make a secure donation, click here: https://www.sagepayments.net/sagenonprofit/shopping_cart/forms/donate.asp?M_id=298374738426