State Minister for the Elderly and Disabled, Sarah Kanyike, has noted with concern the growing behaviour among some parents in Uganda hiding from the public their children born with Down syndrome.
Down syndrome is a condition in which a child is born with an extra copy of their 21st chromosome causing physical and mental developmental delays and disabilities. It is sometimes called trisomy 21.
Ms Kanyike says hiding such children from the public domain means parents deny them the right to education yet they can attain formal knowledge like other children.
She calls on parents to provide such children with all the necessary needs including access to medical treatment among others saying denying them care is an inhumane act that must not be condoned by any community.
Ms Carolyn Ahurra, a mother to a child suffering from Down syndrome urges parents of children with that condition to stop hiding them but enroll them to helping organisations so that they can also benefit from programmes designed for their development.
Sylvia Yasine, who was born with Down syndrome, encourages parents of children with that condition to take them to school so that they can also have a better academic future. She says such children have the potential to learn irrespective of their condition, citing herself as the best example.
Ms Mildred Katusabe, the founder of Rowan’s Down Syndrome Awareness Centre, encourages parents to always rush for medical diagnosis once they detect some health anomalies in their children like delay in walking and difficulty in suckling among others.
Ms Katusabe says one in 800 children is born with Down syndrome adding that she aims to raise awareness about the condition, share experiences and enable mutual self support for people with Down syndrome and their careers.
Mr Robert Rukahemura, the Personal Assistant to the Prime Minister of Bunyoro Kitara Kingdom, says the kingdom will create awareness to its subjects about the little known condition so that people come to know that it exists to help parents to always seek medical help once they identify some defects in their children’s health.
He says the kingdom has now tasked the committee in charge of culture to ensure that they find a local name for Down syndrome to enable the authorities sensitise the subjects about the condition in their local language for easy perception.
All these at the commemoration of the World Down Syndrome Day where more than 45 children living with the condition from Hoima city and district attended the function that was organised by Mildred Katusabe and Christopher Cripps whose son, Rowan, was born with Down syndrome in 2018.
The World Down Syndrome Day falls on March 21 and yesterday (Sunday’s) function was held at HB Hotel in Hoima city.
The focus of year 2021 is improving connections to ensure that all people with Down syndrome can connect and participate on equal basis with others.
About Down syndrome
Down syndrome also called trisomy 21 is a genetic chromosome 21 disorder causing developmental and intellectual delays.
It is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21.
Down’s syndrome causes a distinct facial appearance, intellectual disability and developmental delays. It may be associated with thyroid or heart disease.
Early intervention programmes with a team of therapists and special educators who can treat each child’s specific situation are helpful in managing Down’s syndrome.