Niuniu's struggle

Niuniu's struggle

Advertisement

Months ago, four-year-old Niuniu was diagnosed with late-stage neuroblastoma, a cancer of the nervous system.

To get better treatment for her son, his mother quit her job in the eastern Chinese city of Yancheng, and took him to Shanghai. Now, she and her husband are doing what they can to provide Niuniu with the care he needs, while grappling with the huge financial burden of medical costs and the pain of seeing him suffer.

. SHANGHAI, China. REUTERS/Aly Song

Niuniu pretends to be Superman as his mother watches at the temporary apartment they rent in Shanghai, close to the hospital.

The cancer that he suffers from has a more successful treatment rate if the patient is under two, but in four-year-old Niuniu’s case, the risk is far greater.

To combat the disease, he has undergone surgery, and several rounds of chemotherapy.

The treatment is expensive, with an estimated overall cost of more than 300,000 yuan ($48,991). Insurance only covers about a quarter of this, putting a strain on family finances as Niuniu’s parents worry about their son.

1 / 11

Slideshow

Niuniu is carried through the Shanghai Children's Hospital by his father, who used to own a small business but sold it in order to help make ends meet.
. SHANGHAI, China. REUTERS/Aly Song

Niuniu is carried through the Shanghai Children's Hospital by his father, who used to own a small business but sold it in order to help make ends meet.

The four-year-old cries after receiving a prep injection for his CT scan.
. SHANGHAI, China. REUTERS/Aly Song

The four-year-old cries after receiving a prep injection for his CT scan.

Niuniu's mother, Yan Hongyu, calms her son before the scan.
. SHANGHAI, China. REUTERS/Aly Song

Niuniu's mother, Yan Hongyu, calms her son before the scan.

Niuniu rest his head on his arm as he waits for his CT scan diagnosis.
. SHANGHAI, China. REUTERS/Aly Song

Niuniu rest his head on his arm as he waits for his CT scan diagnosis.

He is given an ultrasound.
. SHANGHAI, China. REUTERS/Aly Song

He is given an ultrasound.

Niuniu sits on an examination table at the hospital.
. SHANGHAI, China. REUTERS/Aly Song

Niuniu sits on an examination table at the hospital.

Yan buries her head in her arms after receiving the testing reports for her son.
. SHANGHAI, China. REUTERS/Aly Song

Yan buries her head in her arms after receiving the testing reports for her son.

Niuniu plays on a bed with his father.
. SHANGHAI, China. REUTERS/Aly Song

Niuniu plays on a bed with his father.

He looks at a children's TV show in the family's temporary apartment.
. SHANGHAI, China. REUTERS/Aly Song

He looks at a children's TV show in the family's temporary apartment.

He has no appetite to eat the food offered him by his mother.
. SHANGHAI, China. REUTERS/Aly Song

He has no appetite to eat the food offered him by his mother.

Niuniu sleeps in the rented apartment in Shanghai.
. SHANGHAI, China. REUTERS/Aly Song

Niuniu sleeps in the rented apartment in Shanghai.

"As the days went by, I simply couldn’t stop my sorrow from emerging."
Aly Song, Reuters Photographer

“Mom, can I touch the stuffed steamed bun? I won’t eat it, just touch,” four-year-old Wang JiachengNiuniu, nicknamed Niuniu, said to his mother while desperately eager for a bite of the meat-filled bun in front of him.

Half a year ago, Niuniu was diagnosed with late-stage neuroblastoma. Since then, he has undergone chemotherapy treatments which cause him to vomit constantly and make it almost impossible to eat anything, especially meat. Yan Hongyu, Niuniu’s mother, cast a bitter smile at her son’s naive request. She was still struggling to believe that he had to suffer so much in his childhood.

I came across Niuniu’s story while looking for a subject for an in-depth picture project about China’s healthcare policy. Before I met the family, I did some searches and found out that there weren’t many treatments available in China for neuroblastoma, a cancer of the nervous system that affects children.

This cancer has a more successful treatment rate if the patient is under two-years-old. But in Niuniu’s case, the risk is much higher. Nonetheless, Niuniu had surgery to remove the tumour. After that, he would have to completely rely on chemotherapy to kill the cancer cells.

Knowing the chances were slim, Niuniu’s parents committed to the treatment with complete faith. Yan quit her job in Yancheng, Jiangsu province, and took her son to Shanghai for better medical services in early 2013.

They rented a 10-meter-square apartment near the hospital, and since then have been rushing between the two places. Niuniu’s father, who used to own a small company in Yancheng, sold up in order to pay the bills. He was still taking some jobs in the family's hometown to make ends meet, but whenever he had a chance he would go to Shanghai to help his wife.

“Nowadays, people just cannot afford to get sick” Yan said as she chatted with other patients’ relatives in the hospital. Before Niuniu fell ill, they were a happy upper-middle class family. Now they are under strain: the estimated cost of the entire treatment is over 300,000 yuan ($48,991), and the insurance can only cover as much as 80,000 yuan ($13,064).

The huge financial burden, restless nights while taking care of Niuniu and mental anguish – none of this matters to Yan. “Nothing is worse than seeing my son suffer everyday,” she said. “I would rather myself being sick.”

Niuniu is not the only child in the family, he has a younger sister. Probably because of his role as an older brother, he has showed much more courage and maturity than most children of his own age. I clearly remember the second time we met at the hospital; Niuniu was getting an injection. Right after the nurse stuck the needle in his arm, he burst into tears. But at the same time, Niuniu said to his mother, “Mom could you stand in front of me to block me? I don’t want the other kids to see me crying.”

The doctor, who wasn’t very optimistic about Niuniu’s case, urged Yan and her husband to be practical and to think about moving on. But every time they saw Niuniu’s face, or every time they touched his bald head, it made it harder and harder for them to give up.

Yan confessed to me one day: “Sometimes I really regret bringing him into this world to suffer from the sickness. I know as a mother it is very inappropriate to have such feelings, but I just feel so guilty.”

My original plan was to try to document the life of this family with as much as respect as I could as a professional outsider, hoping that at the end of the day I would have enough good material to make a strong picture package. But as the days went by, I simply couldn’t stop my sorrow from emerging.

I felt deeply sorry for Niuniu. He was like a little angel except that the disease had taken away his wings. What’s worse, is that tens of thousands of other families are suffering from similar issues all over the world. After being part of this project, I could see their struggle and I could feel their agony.

My deepest regards go to Niuniu and all the fighters around the globe. Get well soon.