Saturday, November 15, 2008

Iraqi children with Down syndrome lack support, services

From Islam Online:

BAGHDAD — Like thousands of Iraqi children who are suffering from the Down syndrome, Younnis Mohammad is tormented by discrimination and the lack of support.

"We aren’t monsters. People look at us as if we were from another planet and are afraid to stay by our side," he said with a voice full of bitterness.

"I want to share with other children the same hopes they have and live in an environment that sees us as children with some health problems and not ogres."

Mohammad is one of thousands of children estimated to be suffering from Down syndrome, a chromosomal disorder caused by the presence of an extra 21st
chromosome.

People with Down syndrome tend to have a lower than average cognitive ability, often ranging from mild to moderate developmental disabilities.

Few of them suffer severe to profound mental disability.

They usually have oblique eye fissures with epicanthic skin folds on the inner corner of the eyes, muscle hypotonia, a flat nasal bridge, a protruding tongue, a short neck and white spots on the iris known as Brushfield spots.

"I'm shy to go out carrying my daughter with me," says Um Zeinab.

"People talk about her and I feel very bad because I feel that I wasn't able to give birth to a healthy person," she adds in tears.

"I don't have money to pay for a treatment and at least inside my home she won't be pointed as a monster."

Activists regret that Down syndrome children are suffering from lack of care by both the government and locals.

"We constantly receive visits from journalists, aid workers and even government officials who leave our place promising help but very few of them do it," said Sahira Abdul Lattif, head of the Down's Syndrome Association (DSA)."When they send something, it isn't enough to cover the needs."

Abdul Lattif, who has a Down syndrome child herself, noted that these children need professional help.

"Professionals like dentists, speech therapists, psychologists and neurologists are essential to the development of these children but they aren't available," she explained.

"And when we can get someone to help us, it is just for one visit while they need a constant follow up."

The lack of aid has forced many care centers to reduce daily food quotas for the children.

"We don't have choice here," regrets Nuria Sabah, the director of House of God's Angels.

"We want to do a voluntary work but for that you need support that is inexistent.

"I hope the government and big NGOs can feel our need and give more help because if the situation continues like this, we will be forced to close down and send these kids home where for sure they won't be able to stand up alone for long."

The government says it is planning future projects for Down syndrome children.

"We know how important is to have a special care for all those children with Down syndrome," Health Ministry official Abeer Salam told IOL.

"However, the ministry is suffering with lack of investments in many areas, especially in projects department but we are hoping that after provincial elections, the central government will give more support to social projects rather than involve only with politics."

And until that happens, Ali Hazeem Tareek, a Down syndrome child, continues to dream of a normal life.

"I hope one day I will be able to walk in the streets and no one will keep looking at me as if I was an abnormal person," he said.

"I have feeling, I feel pain and sorry. The only thing I want is an opportunity to share the society with dignity."