Call to improve care for children with Down's syndrome

"Don't discriminate, we are normal people, and we just want to love you," says a child in a video recorded by the Hiba to Allah Centre for Down's syndrome in Baghdad. However, for the many thousands of children living with the disability in Iraq there is little help or support, leading professionals and parents to call on both the government and NGOs to address the situation. Down's syndrome is caused by the presence of an extra chromosome, chromosome 21, at conception. It is associated with a number of medical problems, including increased risks of hearing and vision defects, heart abnormalities, infection, leukaemia and thyroid disorders. Down's syndrome is also associated with a range of developmental difficulties, such as delayed motor and cognitive skills. It affects around 2 million people worldwide. "I have been doing this job since my daughter was born with this syndrome, trying to teach others that a loving and stimulating environment is essential for growth. But sometimes you fail as you're given no help from others," Sahira Abdul Lattif, president of the Down's Syndrome Association and director of the Hiba to Allah Centre for Down's syndrome in Baghdad, told IRIN. During Saddam Hussein's regime, it was forbidden to receive any kind of aid from NGOs while the government itself did nothing to help, the association said. Since the war that toppled Saddam, many NGOs visited the association but only a few have carried out what they promised, Lattif said. "Those children need special care but the new interim government is not doing anything to provide stability and security for their future," she said. They haven't received any kind of aid from the government and most of the schools in Iraq specialised in this area have been looted and not repaired yet. Children are staying in their homes without the education required for their development. "It is very sad to see your son at home when he needs special care. Even with all our love, he needs to grow up in a special place where everyone can understand him and teach him. I feel as if my hands were tied," Huda Al-Salam, a mother of a child with Down's syndrome, told IRIN. The children lacking care from specialised professionals and there are no volunteers to help at centres, Lattif added, while the government is very slow to make any kind of decision about what, if any, care they will have. Teachers working in the area claim that their salaries haven't been improved by the government while those of other professionals have. The maximum salary is less than US $100 a month and the schools have no way of offering them more. "I've been doing my job for many years with all my heart and passion. All I want is to see that the children are benefiting from it, but it's difficult to do it alone with no help from the government," Suha Muhammad, a maths teacher for Down's syndrome students, told IRIN. Lattif added that since the end of the war last spring only one NGO, the Japanese People, had offered them financial support that gave them a chance to furnish facilities and allow some kind of hope for the future for the children. The help included a generator and an air conditioning unit for the school. The issue presents a financial problem for parents who can often ill-afford the type of medical care that can be needed for their children. The Ministry of Health told IRIN that children with Down's syndrome will be one of their future priorities. But given the critical situation in the country, the ministry said that workers in this area and parents would have to be patient. They also said that their have been some positive developments already, such as the Dentistry Clinic of Baghdad University opening its doors to treat the children free of charge.