The Thorny Path of Fundraising: The Choices of Leukemia Families in Yanjiao

In places crowded with food delivery riders waiting for orders, parents feed their sick children through nasal tubes, desperately pleading with customers not to leave negative feedback after waiting for over half an hour. In October, videos of delivery riders running errands with sick children captured public attention, moving many netizens to donate upon seeing the contact number displayed on the account.

On October 20, Meituan’s official account announced that after thorough verification, several video scenes were staged and false.

The news outlet “Point News” published an apology letter allegedly written by a participant in the staged videos, admitting that while they indeed had a sick child, their actions were inappropriate for attention-seeking. However, multiple attempts by reporters from The Paper to contact this individual for confirmation went unanswered.

Following this controversy, volunteer Xue Fei, who has 11 years of experience in major illness assistance, told reporters that fundraising has become increasingly difficult, with the landscape becoming more complex.

A 2022 study revealed that out of 1,930 cases of major illness crowdfunding, only 1.76% fully reached their fundraising goals.

According to CCTV News, in Yanjiao, Hebei, a large blood specialist hospital (Lu Daopei Hospital) has long been home to a group of parents seeking hope to prolong the lives of their children. In a 2021 report by Shangguan News, nearly half of the delivery riders at Meituan’s Yanjiao Dongmao Station are “little white riders,” whose family members are suffering from leukemia.

Su Chunyan, a lecturer at the School of Journalism and Communication, Chinese Academy of Social Sciences, and her students conducted field research in Yanjiao, discovering that families of these sick children have a low volume of fundraising activity and responses. Families that fail to meet their goals often resort to desperate measures and face risks of scams and fake donations; some families lose part of the funds raised to intermediaries seeking to profit.

Despite the thorns in their path, Su Chunyan sees a strong vitality in these families, stating, “Yanjiao will always find a way.”


Conversations with Su Chunyan: Exploring the Heart of Illness and Resilience

The Paper: What makes Yanjiao a unique field study location?

Su Chunyan: Yanjiao predominantly sees patients with relapsed and complex blood diseases. When a child is first diagnosed with leukemia, the treatment and support are relatively abundant. However, with relapses, finding support becomes exceedingly difficult. The more relapses, the lower the long-term survival rate, and the more money is needed.

The Paper: How do you understand the leukemia families you studied? How do they cope with the reality of serious illness and establish a new order of living?

Su Chunyan: A classmate studying medical anthropology once asked me about the economic perspective of extreme cases, where relapsed patients face immense expenses for bone marrow transplants, spending hundreds of thousands for a mere 25% chance of survival over five years. Is it worth it?

This brings forth the question of life versus money—a moral issue. From a macro perspective, families spend so much, and if they are trying to save a life that cannot be saved, it feels like a waste.

If we view a child’s life as a commodity, it may not seem cost-effective. On the contrary, if a child passes away, having another child could be less costly and potentially healthier. However, this is not merely an economic issue; it embodies life and familial bonds—elements of humanity that cannot be measured in monetary terms.

Before visiting Yanjiao, I struggled to grasp this situation. Once I immersed myself, witnessing firsthand the suffering of one’s beloved child, I realized how devastating the world could collapse around them.

This emotional turmoil leads many families to feel that if they do not exhaust their financial resources and efforts to save their child, they will feel guilty. I describe this situation as “doing everything possible,” where parents strive to provide the best care, seeking any medical resources available.

Many parents, especially mothers, perceive a symbiotic relationship with their children. Some express sentiments like, “If my child dies, I will not live.”

While everyone has a compassionate heart—helping stray animals when it does not affect their lives—Yanjiao families often abandon their careers to care for their children, accumulating debts, even resorting to begging. A single mother might bow repeatedly on a high-speed train to fundraise for her child’s surgery.

They seek every chance for their children, even if the odds are slim. This determination is a part of life’s tenacity, a powerful will within morality, and a shining aspect of humanity.


Fundraising Strategies: A Diverse Approach

The Paper: What methods do these families employ for fundraising?

Su Chunyan: Fundraising among families in Yanjiao can be described as “Eight Immortals crossing the sea, each displaying their skills.”

Almost every family in need has tried personal crowdfunding, including text fundraising, platforms like Easy Fundraising and Water Drop, and video fundraising. Patients often gather to share experiences on how to effectively raise money, discussing critical details to avoid during live streams to prevent account bans.

Some families face literacy challenges and rely on phone calls through WeChat to communicate. Unfortunately, there is a significant information gap between them and the foundations. Not many can contact grassroots organizations or hometown associations for assistance.

Many foundation projects do not support private hospitals (like Lu Daopei Hospital). Patients must find projects to apply to on their own, resulting in minimal funds acquired—often only tens of thousands, which is insufficient.

Local matching donations are also popular. This involves an organizer proposing a project; if the family can raise 50,000 yuan, the organizer matches 500 yuan. In earlier times, the matching rate was higher, leading to enthusiastic participation. However, the rate has decreased, and due to instances of fraudulent donations, families are increasingly cautious.

Some also turn to petitioning for assistance. During my fieldwork, I met a single mother from Guangxi who, after her child relapsed post-chemotherapy in Nanning, sought to secure a low-income subsidy in Beijing. When she failed to obtain it, she recognized that without the funds, her child’s chances of survival were slim. Eventually, she successfully secured the subsidy, receiving additional financial help from her hometown.

There are also many instances of mutual assistance among patients.

Once, an old patient who had successfully undergone a bone marrow transplant returned to Yanjiao to express gratitude to a local grassroots organization leader. This leader, known for helping many patients, received a donation from this grateful individual who witnessed first-hand the organization’s impact.


Risks in Fundraising: Scams and Challenges

The Paper: What risks and challenges do parents face during fundraising?

Su Chunyan: Numerous issues arise during fundraising, such as fraudulent donations.

Some matching donations involve intermediaries, and the fundraising process can be quite murky. There are scammers in Yanjiao who pose as matching donors, absconding with funds from families in need. Such scandals significantly undermine the credibility of many foundations and the fundraising efforts of patients.

Moreover, the matching donation rates are declining, with insufficient legal or policy support from the state for these donations. Families in urgent need of funds are losing this avenue of support.

The Paper: Have you encountered notable cases involving scams or illegal activities in major illness fundraising?

Su Chunyan: Last winter, I encountered an individual claiming to be a businessman who had previously assisted patients, expressing an interest in helping families raise funds. He claimed to collaborate with a Hong Kong foundation focused on financial philanthropy.

Upon investigation, my student in Hong Kong found that the company he mentioned was registered in an area notoriously known for telecom fraud.

He proposed a scheme with a high interest rate for deposits, enticing me to join by offering patient information for fundraising. My gut told me something was wrong, and I declined, yet I was curious about how the scam operated.

I learned that participants were instructed to download an app to engage in online gambling disguised as a fundraising project. This is a classic scam where victims are lured with the promise of quick returns but end up losing significant amounts.

Such scams exploit the desperation of families in dire need of funds, leading them to take risks.


Perceptions of Crowdfunding: The Disparity in Success

The Paper: Recently, a comedian’s family faced criticism for not selling their house or car before fundraising for his illness. What are your thoughts on the lack of standardized criteria for major illness crowdfunding?

Su Chunyan: We often envision sick families as being completely out of options, turning to fundraising as a last resort. People are willing to contribute to help them recover. However, many factors complicate this situation.

Research conducted by Cheng Cheng from Southeast University highlights the crowdfunding paradox: wealthier individuals often raise more funds, while those in greater need struggle to secure assistance.

Crowdfunding via social media can lead to sudden spikes in donations, often based on viral content. However, this is a rare occurrence; the majority of individuals in need do not successfully raise funds.

The Paper: Is it easier for families to attract public attention through online videos for fundraising?

Su Chunyan: Currently, many online fundraising platforms are operated by commercial entities. While some videos can generate significant donations, the underlying operations often eat into the funds raised.

These companies incur substantial operational costs, and families may receive only a small percentage of the funds raised. In extreme cases, families may receive as little as 10%, with 90% going towards operational expenses.

This raises questions of fairness—why should companies benefit disproportionately from families’ struggles over their health? Many families find themselves unable to win legal battles against these companies, as they have signed contracts that bind them financially.


Future Prospects for Fundraising

The Paper: What needs to be improved in the realm of major illness crowdfunding?

Su Chunyan: Philanthropy is quite fragile and reflects socio-economic development. The more developed a society is, the more support families in need will receive from the government, local organizations, and individuals. The greatest hope is that society becomes more prosperous.

When philanthropic organizations design assistance programs, they should not strictly apply economic efficiency standards to filter beneficiaries. Families of relapsed patients and adults should also receive opportunities for support.

I also hope for greater tolerance towards crowdfunding narratives, recognizing the presence of fundraising paradoxes, and that individuals will extend their kindness to genuinely impoverished families.

From the resilient families I encountered, I felt a profound life force. I wish for them to continue fundraising through legal means.

As Xian Jie expressed, the harder patients work, the more she will strive to assist them. This sentiment resonates with all legitimate patient organizations, hometown associations, and support projects in Yanjiao, which have collectively shared their experiences. Yanjiao has created numerous success stories, with many patients who arrived in dire circumstances ultimately recovering after treatment.

This is their story, with each family’s unique journey illuminating the ways they navigate their challenges. Yanjiao will always find a way.


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