Most Ethiopians believe that Down syndrome is a curse from God. They wrongly perceived that children are born with Down syndrome and other mental and physical disabilities to reveal God’s punishment on the parents for their wrong doings. However, this is totally a myth; and the science uncovers the truth behind the case and explains it clearly and differently supported by verified facts.
In an exclusive interview with The Ethiopian Herald Fundraising and Research Expert at the Deborah Foundation Yohannes Fiseha (MD) said that Down syndrome is a chromosomal condition which occurs because of an extra copy of chromosome. It is totally a genetic disorder. A child born with an extra copy of chromosome will be exposed to genetic disorder. Therefore, his/her different organ systems might be affected. For example, the heart and endocrine system will be affected. In addition to this, they will face concerns with ear, nose, and throat conditions.
Moreover, children born with Down syndrome might have from mild to moderate intellectual disability.
In Ethiopia, there is no sufficient data that show the prevalence of Down syndrome. Therefore, there is still a lot of work that needs to be done regarding the issue. That is why it necessitates establishing such a foundation to brighten the future of Down syndrome children in the country, he said.
In Ethiopia, parents in both rural and urban areas tend to hide their Down syndrome children fearing stigma-related outlooks and negative thinking from the society due to their children. It is obvious that there are still many children with Down syndrome who are kept in a room, hidden from the sight of other people.
Parents locked up their children behind closed doors to hide them from society until their adult age. The reason why most of the parents are compelled to do this is because they do not know how to manage and interact with children born with Down syndrome and the negative attitudes the community has developed toward children with Down syndrome as a consequence of lack of awareness and misunderstanding about the case. This scenario is another traumatic situation that might lead the Down syndrome children towards more complicated psycho-social problems.
At the same time, religious fathers also associate such issues with the devil and try to take various measures to exorcise the evil spirits.
Currently, persons with Down syndrome are facing different challenges in Ethiopia due to various reasons. They face difficulties in acquiring quality education, having effective healthcare services, among others due to the lack of an implementable and inclusive policy framework.
Accordingly, the Deborah Foundation was established to support children with Down syndrome and guide policymakers on this issue through generating evidence-based data.
There are various initiatives and commitments at institutional and individual level to create a better future for children born with Down syndrome. However, the only problem is its implementation. Even though there are various policy frameworks that recognize the rights of persons with disability, it is not satisfactory.
Thus, the Foundation is striving to work in the areas of education and healthcare accessibility as well as policy advocacy.
As to him, widespread negative attitudes, stigma and discrimination, as well as minor sentiments among the public are still the major challenges that obstruct children with intellectual disability not to become more competitive in Ethiopia.
“If someone has a child with intellectual disability, it is not the child only that will be suffering. The family will also undergo a lot of problems, among others, economic, social, and cultural challenges.”
Keeping this in mind, it is important to undertake multi-sectorial advocacy efforts towards creating a better awareness among the public to ease the burden of children born with intellectual disability, Yohannes said.
“We need to have a unified voice to advocate for the rights and inclusion of children with intellectual disability through formulating inclusive policy frameworks and increasing government commitment to the issue,” he added.
Currently, Deborah Foundation is undertaking pediatric specialty clinic construction aimed at providing sustainable and easily accessible healthcare services for children with Down syndrome.
The specialty clinic will provide Early Intervention Care (EIC) and various therapy services; including occupational therapy, behavioral therapy, physiotherapy, and speech and language therapy for children with intellectual disability, Yohannes elaborated.
Moreover, the Foundation has signed Memorandum of Understandings (MoUs) with the Ministry of Education, Ministry of Health, higher education institutions as well as other governmental and non-governmental organizations to facilitate the necessary preconditions for children born with intellectual disability.
At present, the Foundation has about 1,900 families registered under it; and it provides various support to the families under its family support program. In addition, those children with Down syndrome are welcome to access free healthcare services by the Foundation in collaboration with local and international partners.
Regarding inclusive education, the Foundation has its own inclusive education facility under the Deborah Academy located in Legetafo. Currently, the Academy is offering education from KG up to 4th grade. Vocational and life-skill training are also given in this facility. So far, the Academy has enrolled more than 150 children with Down syndrome and other forms of disability. Thus, the Academy is providing state-of-the-art education and training to the children through integrating various professionals.
The Foundation has also plans to expand its branches out of Addis in different parts of the country to address the problems that children born with Down syndrome are facing.
The Foundation has finalized preparations to celebrate the annual March 21st World Down Syndrome Day. The day will be marked in Addis Ababa through various programs including mass walk, awareness creation events, and transmitting messages of advocacy for their rights.
According to him, the Deborah Foundation was established on June 24, 2019 by the former House of Peoples’ Representatives (HoPRs) Speaker Abadula Gemeda. His 4th child Deborah was born with Down syndrome and established the foundation that is dedicated for supporting Down syndrome children under the name Deborah.
The establishment of the foundation mainly targets to create a better and more inclusive future for children born with Down syndrome, it was learnt.
BY TEWODROS KASSA
The Ethiopian Herald March 17/2024
