Fidelia Uwizakiza is a 25-year-old woman who is part of the Rwanda Down Syndrome Organizations (RDSO) youth programme. She was born with Down syndrome, a chromosome 21 genetic disorder that causes developmental and intellectual delays. She lives in Kimironko, Kigali, with both her parents and assists them with the management of the family shop in Remera. She is a living proof to the saying that disability is not inability. “I’m grateful to my parents who believe in me and their unwavering support. For the past 14 years, Ive been helping with the shops management. Im grateful that I have a job that I enjoy,” she said. Uwizakiza and her colleagues who have the same disability were on December 2 joined by their families, well-wishers and medical workers to celebrate International Day for Persons with Disabilities. The event took place at RSDO offices in Kicukiro District. This day is annually celebrated on December 3 and it was preceded by weeklong activities that aimed at raising awareness to challenges faced by persons with disabilities. The event, which took place at the RSDO offices in Kicukiro district, was characterized with different charitable acts, where UNDP staff donated toys and IT equipment such as computers to RDSO and the Rwanda Parents Initiative on Autism (RPIA). Also present was Assumpta Ingabire, the Minister of State in charge of social affairs, which different speakers said was as a symbol of solidarity in the advocacy for people with disabilities. According to Dr. Leon Mutesa, the Director of the Centre for Human Genetics at the College of Medicine and Health Sciences-University of Rwanda, only 700 children with Down syndrome have been identified and have been getting help for the past five years. “I feel this is a small number compared to the number of people who actually need assistance,” he stated adding, “since some children with the same problem are kept hidden in their homes, unable to be taken to and monitored by doctors, or live in communities where there is still a lack of awareness”. According to him, 20-30% of Down syndrome children die from heart complications. “Most of these children are born with heart problems, and if they are not treated by a doctor early on, they will die from heart problems”. “So, especially when children have problems like these, parents should be aware of and actively monitor their health,” he noted. They can grow into successful people Edwige Musabe, the vice-chairperson of RDSO, stated that if properly cared for, a child with this type of condition can grow to be as successful and deserving of all rights as any other person. “This is a lifelong disability, but if properly treated, kids can certainly learn a lot. They are able to study and to undertake some jobs later on,” she said. “Their problem isnt a lack of capacity to perform things; its a lack of follow-up,” she explained. The major obstacles these children confront, according to her, are a lack of suitable education, adequate health care, and advocating for their rights. Ingabire, who handed the donations to the two advocacy organizations for children with disabilities, said that the government is looking for ways to facilitate access to education for children in these situations. She said, “The government, in collaboration with other stakeholders, is devising for strategies to have in place adequate schools for these kids and, more critically, develop adequate curriculum that corresponds to their developmental needs.” “For the time being, the main focus is on developing a proper curriculum so that, even if another good doer establishes a school or a center for them, they can follow the curriculum that is tailored to their condition,” she added. Maxwell Gomera, the UNDP Resident Representative, also emphasized the need of providing children with disabilities with equal rights and opportunities as normal children. He shared a testimony of one of his friend who had a child born with Down syndrome. “The parents of Divine (his friend’s child) didn’t give up on him. They took care of him and even got him with some devices, which he grew to understand and love. Hes really brilliant at gaming” he remarked. He applauded the resilience of parents of children with disabilities and asked for collective efforts in making these kids’ lives better.
