When Eric Madete and his wife welcomed their baby in to this world 19 years ago, all seemed well until their child developed complications. While they consistently went to their physician for treatment, it is only their surgeon who recognized that their child had Down Syndrome. To help cope with their child’s condition, Eric and his wife were referred to a support group for parents with children with disabilities. Although these sessions were useful, the couple felt the need to fill the gap and provide support for parents and caregivers of children with Down Syndrome. It is at this point that Eric, together with other parents, founded ‘Down Syndrome Society of Kenya.’

Down Syndrome Society of Kenya

Down Syndrome Society of Kenya (DSSK) is a registered non- profit disabled persons Organisation, working for the rights and welfare of persons living with Down syndrome. The society was registered in 2003 under the Society’s Act, and in 2013 with National Council for persons with Disability (NCPWD). Membership of the society comprises of those affected by Down Syndrome, including parents, siblings and any interested person. DSSK, conducts research, advocacy and public information campaigns to raise awareness and educate the society on the condition which has been misconceived especially in Africa.

‘In some communities in Africa, Down Syndrome is still seen as a product of witchcraft, sin and a communicable disease. As a result, stigma against persons with Down Syndrome has grown.’Notes, Eric Madete

Although Down Syndrome is associated with intellectual and developmental symptoms such as delayed learning and speech problems, adults with Down Syndrome are able to thrive in inclusive societies.

To support their awareness campaigns, DSSK regularly conduct trainings among doctors, teachers, religious leaders and other professionals on recognition of persons with Down Syndrome. They are currently finalizing a curriculum to educate members of the judiciary on handling cases involving people with Down Syndrome.