Dr Arvind D’Almeida
World Down Syndrome day is annually observed on March 21 to raise public awareness of Down syndrome. The date ‘21’ is symbolic because this congenital disorder is caused by having an extra 21st chromosome.
Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socioeconomic lines, and affects approximately one in 800 births worldwide. It not only causes intellectual and physical disability it is also associated with medical issues . Down’s Syndrome is present in around 0.1% of births and this seemingly reassuring statistic worldwide actually means that every twenty minutes, a baby with Down Syndrome is born.
In the 70’s Children born with Down Syndrome would be written off and the best of attention would be limited to a sheltered existence until death Such children were not expected to live past their teens. The saddest part of the whole situation is that if such children are given therapy within a year after birth, remarkable recovery is possible.
With parental awareness of the Syndrome and improved medical care these children progress to such an extent that he or she becomes self reliant in life’s basic requirements and can even be employed in simple occupations. But since there was no known treatment, children with Down Syndrome languished and obviously sank in to the quagmire from which there was no hope of recovery.
The quality of life of people with Down Syndrome can be improved by meeting their health care needs, which include: regular check-ups with health professionals to monitor mental and physical condition and to provide timely intervention be it physiotherapy, occupational therapy, speech therapy, counselling or special education. Individuals with Down Syndrome can achieve optimal quality of life through parental care and support, medical guidance and community based support systems like inclusive education at all levels. This facilitates their participation in mainstream society and the fulfilment of their personal potential.
All people with Down syndrome must have opportunities to live fulfilling lives, included on a full and equal basis with others, in all aspects of society. The 2030 UN Agenda for Sustainable Development, a global plan of action for people, planet and prosperity, pledges that “no one will be left behind”.
Its time parents, community, medical fraternity and law makers jointly take a pledge to uplift these children in society. ‘Let us walk together’.
(The writer is the president of Indian Academy of Pediatrics, Goa State Chapter)
