Erica Lee, the Director of The Hong Kong Down Syndrome Association

World Down Syndrome Day (WDSD) , 21 March, is a global awareness day which has been officially observed by the United Nations since 2012. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. This extra genetic material causes the developmental changes and physical features of Down syndrome.

 

Down syndrome varies in severity among individuals, causing lifelong intellectual disability and developmental delays. It's the most common genetic chromosomal disorder and cause of learning disabilities in children. It also commonly causes other medical abnormalities, including heart and gastrointestinal disorders. Better understanding of Down syndrome and early interventions can greatly increase the quality of life for children and adults with this disorder and help them live fulfilling lives.

 

The Hong Kong Down Syndrome Association is committed to serving individuals with Down Syndrome, intellectual disabilities or other disabilities and their family members with integrated family support and vocational rehabilitation services. As an organization dedicated to serving people with Down syndrome and their families, we deeply understand that for expectant parents who are suspected of having a fetus with Down syndrome or parents who have just given birth to a newborn baby with Down syndrome, they will encounter a critical period full of hesitation, confusion and doubts. Through our Pre-natal & New Born Counselling & Support Service for Parents of Babies with Down Syndrome, we actively provide these parents with comprehensive information and appropriate emotional support.

 

Let me share a life story with you. 

 

The parents contacted us after the birth of their daughter Esther in 2016.  During the various pregnancy check-ups, they were told repeatedly that there were high risks of carrying a fetus with Down Syndrome.  At first, the parents were shocked by the persistence from the medical professionals despite having communicated their decision to continue with the pregnancy. Esther’s parents were very positive and accepted the fact she would be born with special needs. They said, “She is a gift from God. Down Syndrome does not define who she is, she is a precious child first!”

 

As the parents were not familiar to the rehabilitation services in Hong Kong, our social worker shared lots of useful information with them. For example, the importance of Child assessment, the application procedures for social welfare and the importance of early intervention to newborn babies with Down Syndrome, etc.  Esther was born premature and also confirmed having congenital heart defect soon after birth.  She was admitted to PICU for some time in infancy.  Our social worker had also provided counselling and psychological support services to them. Early intervention training was provided to enhance her development in muscle, cognition, language and social skills. They were deeply touched by the support and care from the association to the family still now. 

 

Esther is nearly 7 years old now and is studying in a primary school since last September.  She is sociable at school and is coping well with her primary school life.  The parents shared that Down Syndrome does not define who the person is. Some people may find it difficult, but don’t forget that there is a community with a big heart that is willing to help, care and accept.

 

It’s deeply true that everyone has their strengths and weaknesses, and people with Down Syndrome need more acceptance. Individuals with Down Syndrome have the right to social resources, and also the responsibility to contribute to society. They are capable of working as long as employers give them the opportunity. If you are willing to accept and embrace people with Down Syndrome, they can also have a happy and meaningful life just like you and me!

 

Do you want to get involve to raise the awareness on Down Syndrome? It couldn’t be easier! As I mention in the beginning, most people with Down Syndrome carry an extra one at their 21st pair of chromosomes. The shape of socks is like a chromosome. This condition, then is just like a pair of colorful mismatched socks. The odd pair of socks may be a different pattern or color but can still be worn together and form a colorful picture! On the coming 21 March, the World Down Syndrome Day, all you need to do is to wear mismatched socks or most colourful socks that are going to get noticed. To represent the beauty of diversity, possibility, inclusion and a new perspective of seeing things on this special day, and also to raise the public concern to people with Down Syndrome together!

 

May we live in a society without prejudice, where everyone can enjoy equality, love

and, friendship.

I’d like to dedicate this song to the listener and all our members...“This is Me…”