Feature: NGO helps refugee children fight cancer in Iran

TEHRAN, Iran (UNHCR) - Seven-year-old Nazifeh likes her new home at the foot of the Alborz Mountains in northern Tehran. She has her own bedroom with a TV, the playroom is just down the corridor and there are plenty of toys and other children to play with.

Nazifeh has been at the Mahak hospital and rehabilitation centre for children suffering from cancer for the past three weeks. The young Afghan refugee is suffering from Ewing's sarcoma, a form of cancer that attacks soft tissues around the bones, and is most common in children. She will stay here until her radiotherapy treatment is completed. The doctors do not know yet how long this will take; it will depend on how well she responds.

Nazifeh's family has been living in the suburbs of Tehran since it fled Kabul and the Taliban in 1995. The little girl lost her mother to breast cancer two years ago.

Today, Nazifeh seems more preoccupied with the tooth she lost the day before than with her illness. Her great aunt, Golkhanom Mohammadi, is staying at the hospital with her. "Nazifeh is happy here," she says. "She does not feel too ill from the treatment, and she loves having her own bedroom." The little girl agrees: "I have my own TV!"

The UN refugee agency has worked with the Mahak Charity to Support Children Suffering from Cancer since 1999. The charity was set up in 1991 by three volunteers, taking care of 23 children in its first year. It has grown since then, and recently finished building its own hospital, which has room for 120 children and accompanying adult relatives. This year, Mahak has helped 2,517 children, including 120 Afghan and seven Iraqi refugees.

Many Iranians doctors give their time and expertise free of charge to Mahak, which receives donations from Iranians all over the world. But the charity's biggest challenge is the high cost of cancer drugs.

Last year, UNHCR gave the charity over $80,000 to cover the cost of medicine for refugee children. "Although we are facing budget restrictions which will lead to cuts in some programmes, we will not abandon these children," said Philippe Lavanchy, UNHCR Representative in Iran. "This is an example of extremely positive cooperation with an outstanding non-governmental organisation doing excellent work, and we will continue to support Mahak."

Hundreds of volunteers work for Mahak, including nurses, social workers, fundraisers and counsellors. Each family is referred to a counsellor as soon as it makes contact with the charity.

Shirin Sedirjh Nejad is head of social services at Mahak, and also does some counselling. "My role as a counsellor is two-fold," she says. "First, I talk to the family about their practical concerns and I reassure them that financial help will be available throughout the illness, however long it takes. This can be especially important for refugees, who often have very little income and are concerned about the impact that spending a lot of money on one child will have on the rest of the family."

She added, "Second, and even more importantly, I talk to them about their fears, and I try to help them cope with the illness emotionally. Often the parents need this kind of support even more than their sick child."

The families' fears are usually made worse by a lack of basic knowledge about cancer, and the counsellor has a crucial role to play in bridging that information gap. This can be particularly relevant for Afghan refugees, many of whom are illiterate and hold false beliefs about cancer. Families are relieved to find out that the majority of the children not only survive, but also go into full remission. Out of over 2,000 children treated by Mahak this year, 600 successfully completed their treatment, and 153 died. Often, realising that cancer is not a death sentence can make a dramatic difference to the family's attitude, which is extremely important for the child.

Maryam is proof that there is hope for refugee children in Iran suffering from cancer. Four years ago, she was diagnosed with bone cancer. Her father, an Afghan refugee who works as a farm labourer near Karadjz, worried that he would not be able to pay for her treatment. UNHCR put the family in touch with Mahak, and paid for Maryam's drugs.

Today, Maryam is in full remission, and leads the busy life of a healthy 10-year-old: she attends primary school during the day and plays with her three youngest sisters in the evening.

When Nazifeh takes her to the playroom, Maryam seems very impressed. "I wish I could have stayed here when I was sick," she said to her beaming friend.

"Nazifeh spends hours playing in here, she loves it here," the nurse says. "It's very important. It can make a big difference to the treatment when the child is happy."

By Marie-Hélène Verney
UNHCR Iran