KAMPALA – The Deputy Speaker of Parliament Thomas Tayebwa has said that leaders have an obligation to work towards finding a cure for children born with Down syndrome.
Down syndrome is a chromosomal disorder caused by an error in cell division that results in an extra 21st chromosome. The condition leads to impairments in both cognitive ability and physical growth that range from mild to moderate developmental disabilities.
Tayebwa was speaking at the celebration to mark World Down Syndrome Day under the theme: ‘With Us Not For Us’ at the International School of Uganda on Tuesday
“We need to work together to support the research organizations which are working tremendously hard to find a cure for Down syndrome. We should not fear speaking about this condition. We need to raise awareness among the masses so that people suffering from Down syndrome are helped and they are not stigmatized,” Tayebwa said.
Echoing the theme: “We should shape our policies to protect our people and ensure equity and equality”.
He said Uganda has done a lot for special interest groups and it is high time “we took a special interest in people with Down syndrome”.
He said parliament, through its committees on Health and Equal Opportunities to ensure that people affected by Down syndrome are treated equally and fairly.
“We shall work with the Ministry of Health to see how best such a disease can be brought to the forefront of the conversation”.
Anny Niwagaba who works with Angel Centre for children with disability in Wakiso said children born with Down syndrome should included in every sphere of life.
“We call upon the government and everyone in the country to give chance to people living with Down syndrome,” she said.
“The Biggest challenge in raising children with Down syndrome is that limited access to a number of services because some of these children normally have so many complications but little has been done to support them,” she added.
Ms. Lydia Nalumu, a parent to a child born with Down syndrome says it hasn’t been an easy journey raising his son (Derrick Nkubwa).
“He (Derrick) has been given a job at the International School of Uganda and now he is benefitting,” Ms. Nalunga said. “These children need to be loved and being patient with them. In schools, some teachers don’t understand them.”
Although data on the number of children with Down syndrome in Uganda is scanty, internationally one baby in every 1000 babies is born with the condition. With a Ugandan Population of 45 million, this translates into about 45,000 people living with the condition in Uganda.
Features of children with Down syndrome include: small ears, short fingers, broad hands, a flat neck at the back with a low-lying hairline, protruding tongue, small mouth cavity, slanting eyes like Chinese, below average weight and height at birth.
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