Install

Get the latest updates as we post them — right on your browser

. Last Updated: 07/27/2016

A Helping Hand at Children's Cancer Hospital

For MTThe Nastenka Fund offers support to families with children receiving treatment at Moscow's Institute for Pediatric Oncology.
Early one Friday evening, the corridors of Moscow's Institute for Pediatric Oncology are quiet. Jamila Aliyeva leads the way to the nurses' room. Along the way, we pass two boys with caps covering their bald heads batting balloons, oblivious to the intravenous tubes connected to their arms.

We stop to talk to a worn-out looking woman whose son's leg was recently amputated.

Aliyeva walks the corridors routinely as part of her work with the Nastenka Fund, which tries to improve conditions for the young patients and to help their families cope with the emotional and financial difficulties of caring for them. She founded the fund after her own son, Murad, developed cancer.

Over a cup of coffee, Aliyeva pulls out a folded envelope that contains a clipping of an article printed in The Moscow Times in September 1998 about Murad, who was then a patient at the hospital, and his photo. It shows a little boy with a big smile and dark curls.

"I don't look at his picture," she says, putting it back in the envelope.

When the article appeared, Aliyeva was struggling to gather $15,000 to treat the 5-year-old boy's life-threatening, stage-four neuroblastoma at Amsterdam's Emma Children's Hospital. Eventually, Aliyeva was able to take Murad to the Netherlands for treatment, but his chances of survival were slim, and he died after a two-year battle with cancer.

While he was undergoing treatment in Moscow, Aliyeva met other parents, mostly mothers, some of whom had given up their jobs and left other children with relatives to travel from Siberia, the Urals and other far-flung regions to bring their sick children to Moscow.

One family from the Vologda region, the Koposovs, had brought their daughter, Nastya, to the hospital for treatment. Nastya was "a typical little Russian girl with big blue eyes," Aliyeva said. Typical maybe in looks, but Nastya spent most of her short life in the hospital while doctors performed bone marrow transplants and radical chemotherapy on her. When she was 3 years old, Nastya died in a sterile, plastic box-like room in the hospital's bone marrow transplant ward.

Her death affected Aliyeva profoundly. "When I saw how she died there, all alone, behind a glass wall, I realized that even if my son recovered, I could never live again as I did before. I had to do something to help these parents and children," she said.

Feeling Nastya represented all Russian children, Aliyeva dedicated the fund to her memory.

Since her son's death, Aliyeva has regularly returned to the hospital to distribute what financial support the fund can provide for children in the bone marrow transplant ward, where the most advanced cases of cancer are treated.

The mothers there are often at their wits' end, scrambling to find enough money to pay for specific treatments. Though medical care is free, many necessary procedures and medicines are not covered by the state health system.

Despite their difficulties, Aliyeva said the mothers try to look happy around their children. "They always try to laugh and smile when they are with their children, so much that they are emotionally drained," she said. "They leave their child's bedside and the facade quickly fades. Their strength melts, and they cling to the walls, crying hysterically."

According to Health Ministry data, approximately 3,000 children are diagnosed with cancer each year. However, other reports place this number at more than 5,000.

In Russia, bone marrow transplants -- often the only effective treatment -- are only performed half as often as is necessary. The reason: a chronic lack of financing for children's cancer research and treatment. A single bone marrow transplant costs between $20,000 and $40,000.

Aliyeva says the emotional trauma the parents in the hospital experience can be severe. Cancer treatment takes an average of seven months to a year, but the mothers who come from the regions do not have access to proper housing in Moscow. A so-called "mothers' room" at the hospital is a hodgepodge of lockers, a few beds and a couple of hot plates. The only support the mothers get from the government is detskiye dengi, or children's money, which amounts to less than $15 a month.

Aliyeva said the support systems for parents can't compare with what she experienced in the Ronald McDonald House in Amsterdam: "I saw the standard of living that parents and children experienced in Holland. They have wonderful rooms for families to live in while their child is being treated and great support systems."

The Nastenka Fund was formally registered as a charity in February. So far, it has received a donation of $9,500 from the American Women's Club, and a handful of Americans and Britons make donations each month. Aliyeva also contributes to the fund from her own income as a Russian-language teacher to foreigners.

Aliyeva has secured donations of small television sets for the children in the ward and has procured a new refrigerator as well. Her immediate quest is to find someone to donate and install an air conditioner for the bone marrow transplant ward.

To make a donation or obtain more information, contact the Nastenka Fund at 312-9505, 8-903-195-9460 or at fond-nastenka@land.ru