Charity program eases parental worries
The Xiaobu Home in Shanghai has provided free accommodations for more than 400 families since November 2020. LIU YING/XINHUA
Free accommodations provided for children in urgent need of medical treatment
He Yicheng, a 4-month-old girl, needs to take eight kinds of medicine every day－most of them two or three times.
Early last month, she was taken by her mother, Zhou Yan, to Shanghai from their home in a remote area of Qujing, Yunnan province, for medical advice and treatment after a local hospital diagnosed the girl with neonatal hepatitis syndrome and pneumonia.
Traveling a long distance to seek medical treatment for the infant was an onerous and worrisome task for Zhou, but she was lucky in finding temporary accommodations.
She and her baby are staying at a small apartment in a four-story building 6 kilometers from the Children's Hospital of Fudan University, which they visit regularly for He's treatment.
The building houses 18 apartments provided free by the hospital and the Beijing One Heart Sphere Charity Foundation, which helps young patients and their parents who travel to the Shanghai facility for treatment.
Wang Ying, from the charity foundation in Shanghai, said, "The number of apartment rooms is very limited when such families' needs are considered, so they are provided to those urgently requiring help both in terms of the child's illness and the family's financial situation."
The foundation said that in addition to Shanghai, it has provided free accommodations to families taking their children for treatment in Beijing and Wuhan, capital of Hubei province.
Xu Hong, Party secretary of the Shanghai hospital, said, "There are usually heartbreaking stories behind many families taking their sick children to big cities for treatment. Shanghai is huge and strange to them, but we want to give them a ray of hope."
The hospital serves as a national children's medical center, handling many severe and difficult cases that require medical consultancy and treatment.
Xu said the hospital hopes the foundation can provide additional rooms to benefit more families and that a volunteer team will provide additional help.
Since being established in November 2020, the Xiaobu Home in Shanghai has provided free accommodations for more than 400 families. Wang said the name xiaobu translates as cuckoo chick, symbolizing new life and hope in spring.
Holding her baby to board a train to Shanghai, Zhou, the mother from Yunnan, said she was optimistic, as she thought the child's condition was not severe, so they could return home within days.
However, doctors at the Shanghai hospital diagnosed the girl with cholestasis, liver fibrosis, congenital cytomegalovirus infection, and hearing and stomach impairments.
Cholestasis impairs the flow of bile from the liver to the small intestine, liver fibrosis occurs when repetitive or long-lasting injury or inflammation causes excessive amounts of scar tissue to build up in the organ, while congenital cytomegalovirus infection occurs when this virus crosses the placenta during pregnancy and infects the fetus.
The girl was hospitalized for checkups until the end of last month. Her condition gave cause for concern, and mother and daughter needed to make follow-up outpatient visits regularly and wait for a gene examination report.
Before the girl was discharged on Dec 31, the head of the liver disease department told Zhou that the hospital could provide accommodations for her and her daughter. Zhou completed the application forms, but no rooms were immediately available, so she rented elsewhere for several days before moving into the apartment on Jan 5.
"I couldn't believe it when I was told there was a place where we could stay free of charge," said Zhou, 30, who was a hotel manager before stopping work to take care of her daughter.
After checking in, each family in the apartment building is provided with food, other daily necessities and, if needed, clothing for the children.
Zhou asked for several items of oversized clothing for her baby, who has severe abdominal dropsy－an abnormal accumulation of fluid in the abdomen－so that clothes the right size do not fit her at the waist.
Zhou said her husband is the only breadwinner in the family, with an annual income of 60,000 yuan ($9,400). The couple also needs to provide care and financial support for their parents. Zhou said her husband could not accompany her and their daughter to Shanghai, as he had to stay home to take care of their 4-year-old son and elderly mother-in-law who was diagnosed with cervical cancer several months ago.
Wang, from the Shanghai rescue center, said that when doctors encounter families in extreme difficulty, they provide the option of free accommodations.
Parents need to fill out application forms, the physicians in charge and department heads state the reasons for the recommendation, and the office at the residential community where a family lives provides evidence that the family faces financial difficulties.
Wang said the children are often undergoing postoperative recovery after an organ transplant or tumor surgery, and need to make regular hospital follow-up visits.
"Each family can stay here for a maximum of one month, ensuring that others can be included in the charity program," she said.
Parents work in the kitchen at the home. LIU YING/XINHUA
Return residents
The one-month agreement does not apply to return visitors. Zhan Jiaxing, a 12-year-old who had bone replacement surgery in her left arm in May due to a tumor, has stayed in the apartment building five times, undergoing chemotherapy two weeks every month.
Going downstairs to the communal kitchen to cook noodles for her lunch, Zhan, who comes from a rural area of Jining city, Shandong province, said: "It's warmer in Shanghai in winter. It snows in my hometown, but it doesn't snow here."
Zhan said she often used to invite classmates home for meals, as she and her mother are good cooks. However, in the apartment, Zhan's culinary skills were challenged, with noodles and other food sticking to the bottom of a pot, as she could not lift her left arm and was only able to use the right one.
Li Xianxian, the girl's mother, said her daughter is talkative and capable of taking care of herself. At the beginning of the fifth grade, she started to cycle to school, but fell ill four months later.
During the first two months when Zhan was treated at the Shanghai hospital, mother and daughter stayed in a nearby 20-square-meter apartment, but the rent of 3,500 yuan a month and medical bills were a heavy burden for the single mother. When Zhan started chemotherapy, the hospital offered free accommodations at the Xiaobu Home.
Li, 39, said: "I was touched. We traveled quite a long way to Shanghai, but felt really frightened because of my daughter's condition. The hospital and the Xiaobu Home have provided so much heartwarming help throughout this difficult time."
She said Zhan completed chemotherapy early this month and will have a follow-up check on Feb 7.
"If everything goes well, I plan to send her back to school in September. She has been continuing her studies with my help," Li added.
Lower rents
Wang said the foundation launched its first accommodations project in Beijing in 2017 by searching for apartments in areas near hospitals.
In the Chinese capital, it has taken up a building with 10 apartments similar to those in Shanghai, and which is near two hospitals. It also has individual apartments near seven other hospitals specializing in children's diseases.
In Shanghai, the Xiaobu Home is situated in a white-walled building in an area where the government provide rents lower than the market average for young workers new to the city.
Wang said she initially preferred another small building closer to a hospital and located in a park, but finally abandoned this idea, as there was no kitchen.
"Cooking is important for these families, as the children need nutritious food. Some of them may also have special dietary requirements," she said.
Each room is equipped with a kitchenware disinfector and ultraviolet sterilizer, as the children, especially those who have just received a transplant, have low immunity levels and need a clean living environment.
"In many cases, these families would prefer to rent an apartment with others to reduce the cost, but very often such an arrangement is not suitable for these children, as it may trigger infection," Wang said.
She added that parents staying in the building communicate via a WeChat group, where they also post their requirements for visiting the hospital every morning. Volunteers then help book a taxi or minibus.
Wang said, "These parents shoulder a heavy burden due to their children's illness. When they ask for money, some of them are avoided by family and friends, and they may even face a marital crisis."
Appreciation, kindness
Volunteers said they often find thank-you messages when families check out. Sometimes, parents write down information useful for incoming families, such as traffic details, the location of shops, and recommendations for restaurants.
Families also leave cash donations. Wang said one father who brought his 7-month-old son to Shanghai from Shantou city, Guangdong province, for a liver transplant left 50 yuan when they departed earlier this month.
"For those families, 50 yuan can buy meals for the parents for an entire week," Wang said.
Total rent for the 18 apartments is more than 600,000 yuan a year, but does not include other costs, such as renovation work and provision of items such as fridges, washing machines and detergents.
Wang said the foundation's funding mainly comes from two sources－public donations online and enterprises. Residents also donate cash or toys after reading news reports about the foundation's work.
Last year, an elderly couple contacted the foundation and donated a year's rent for an apartment.
"I offered to put a plate bearing the couple's names on the apartment door, but they declined. They said we should just write 'love, grandparents'," Wang said.
Tao Enyun, 40, whose daughter received a bone marrow transplant to treat severe combined immunodeficiency at the end of 2020 when she was 10 months old, has stayed at the Xiaobu Home with her baby several times, as the girl needed to continue anti-rejection and anti-infection therapies. Severe combined immunodeficiency is a rare congenital disorder of the immune system characterized by the inability to produce a normal complement of antibodies and T-cells.
Tao and her husband, who are flower growers from a rural area of Qingzhou city, Shandong, said they received countless offers of help as they sought medical treatment for their child.
The foundation helped the couple raise more than 330,000 yuan on a public charity website for the transplant. In July, they started a public fundraising drive on the website, aiming to raise 200,000 yuan to partly cover the bills for follow-up treatment.
"College students even visited our home to do livestream broadcasts for our flower sales, helping us generate more income," Tao said.
"We have raised money through loans, by borrowing and through help from the public.
"Fortunately, our daughter's immunity levels have risen gradually. Doctors said she needs to continue taking at least six drugs for six to 12 months to prevent infection. If her immunity can reach the normal level during this time, she can stop the medication."