Most people have 23 pairs of chromosomes, for a total of 46. But a person with Down syndrome has an extra chromosome (47 instead of 46) or one chromosome has an extra part. Chromosomes contain hundreds, or even thousands, of genes which carry the information that determines your traits. This extra genetic material causes problems with the way their bodies develop – mentally and physically.
Observed by the United Nation since 2012, the World Down Syndrome Day (WDSD) is global awareness regarding the condition. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication of the 21st chromosome which causes Down syndrome.
On the occasion of WDSD 2021, we hope to do our part in the creation of awareness regarding Down Syndrome, which we are aiming to achieve through a series of stories by different people who need to be heard.
Without further ado, here is the story of Aminath Sama, a long-time volunteer at Beautiful Eyes – an NGO with a mission to promote Down Syndrome awareness in the Maldives and to create a support group for parents of children who has the condition.
Sama started her volunteerism journey back in 2015, when she had plenty of free time – assisting teachers in due course of classes.
She shared with us her biggest two reasons for becoming a volunteer – one being the that these kids were just balls of sunshine that radiated happiness with everything they did – and the second being to create more awareness and breaking the myths surrounding Down Syndrome in the Maldivian community.
It is not to surprise that one of such myths that is commonly believed this way is that children with Down Syndrome are incapable of learning and holding attention. Sama debunks this with almost six years of experience working with such children. Children with Down Syndrome are visual and slow learners. Once they find something they are interested in learning about, they become dedicated to find perfection in it. In this regard, some of the children she has worked with through patience and perseverance has learned to do things that people have thought they would never be able to do such as cooking, swimming, stitching, reading, writing etc. and not to mention, they are pretty good at it too!
Unfortunately, at present Sama is not able to dedicate as much as time as she did before on her volunteerism ventures as she now juggles a full-time job.
Whilst Sama has had her fair share advocating for Down Syndrome and working with children who has the condition – she does point out that her reach has been just limited to Male’ City. Hence, she aspires to reach her hand of out to those from all parts of the country. But most importantly, she dreams of a more inclusive community – as a person with Down Syndrome are just humans like the rest of us. Who else is up to join her in this conquest?