The Global Livingston Institute and the Uganda Down Syndrome Association have held a stakeholders meeting with members of Parliament sitting on the Uganda Parliamentary Forum for Children and those on the Health Committee.
The meeting was called to discuss ways in which the different stake-holding ministries can support persons with Down syndrome to achieve their potential through education, create awareness of the persons with Down advocate specialized health care to those with secondary defects like heart failures that are brought about by the disability and most importantly, join the awareness raising efforts that the Consortium has pioneered since 2017.
Down syndrome is the most common chromosomal abnormality typically associated with characteristic physical features, some health and developmental challenges, and some level of intellectual disability.
Typically, a baby is born with 46 chromosomes. Babies with Down syndrome have an extra copy of one of these chromosomes.
Down syndrome can be categorized as Trisomy 21, Mosaic Down Syndrome, and translocation Down syndrome.
A baby born with Down syndrome usually suffers from intellectual and developmental problems. They could be mild, moderate or severe.
Some people are healthy while others have significant health problems such as serious heart defects; children and adults with Down syndrome have distinct facial features, though not all people with Down syndrome have the same features.
Speaking at the engagement, Dr. Thelma Awori from The Global Livingston Institute, urged parliamentarians and community leaders to take the lead in creating awareness and recognizing World Down syndrome Day, celebrated every year on March 21.
She said more needs to be done to beat the stereotypes surrounding Down Syndrome in Uganda.
Her call was also reechoed by Hon. Muwuma Milton, MP Kigulu South, who revealed that he will be tabling a motion in parliament to recognize Down Syndrome in Uganda but also call upon other MPs to join the awareness drive.
He said the motion will help create awareness, but also urge the government to put in what it deserves, and what it requires to help these children.
Hon. Mahkola Margaret said children with Down syndrome are neglected mostly because they have not been looked at with the much-needed urgency.
She said the parliamentary forum on children will do everything to see that most children with Down syndrome, get the much-needed care, and therapy.
“We need to find a way to take care of these children. Also as the government and Members of Parliament, we have not been having a lot of information on this. Many have been sending these children on the streets of Kampala and using them as bait to look for money. Those of us who are committed to saving these children, we want to call upon you to sincerely save these children. We may be having some gaps in our laws, more so to advocate and fight for the rights of these children, but it is our duty as the parliamentary forum on children to come up and create awareness and strengthen the role,” she said.
Commenting on the motion to be moved, Mahkola said, “So as we move this motion, we’ve discovered from the doctors that our hospitals that have doctors who can handle the situation do not have the machines. The doctor told us that we have a few machines but we shall advocate that some of these relevant machines be put in all regions across the country, and where possible if they can go as far as going to health centre IVs because we have few regional hospitals in the country. Many of these children are up country moving to all those regional hospitals is expensive, distant and so inconveniencing. So, we shall advocate and lobby the government to procure more because government must take care of all human beings in the country. More so, when it comes to the health care sector.”