‘Long way to go’ on awareness on Down Syndrome

World Down Syndrome Day is celebrated today, 21 March, across the world. The day is hugely important to those with Down Syndrome and their families. Locally, this year is a special year, as Down Syndrome Association Malta celebrates its 40th anniversary.

“It’s the day when you celebrate and point out all the positives. If you have a child with Down Syndrome, World Down Syndrome Day is your day,” said Down Syndrome Association Secretary, Marija Laura Mifsud.

“You see all the support, locally and around the world, and it helps you feel part of a community. It’s not to be pitied”. Laura speaks from first-hand experience as a mother of 15-year-old Essien, who has Down Syndrome. “We still have a long way to go to create awareness, one key stigma we fight is that these children are angels of God. It’s not uncommon to hear ‘jaħasra, or miskin’.”

World Down Syndrome Day (WDSD) is always celebrated on March 21st (the 3rd month of the year) to signify the uniqueness of the triplication (trisomy) of the 21st chromosome, which causes Down syndrome. This year is the 16th anniversary of WDSD and the tenth year that the United Nations will officially observe the day.

Down Syndrome affects approximately 6,000 babies at birth every year and around 6 a year in Malta. This is a global event created to raise public awareness, promote inclusivity, encourage advocacy, and support the wellbeing of those living with Down Syndrome.

Locally, Down Syndrome Association Malta works relentlessly to act as the voice of those with Down Syndrome and their families, both in legislative matters and on the international stage. They also offer continuous support to families. There are currently 230 members of the local Association, although not everyone in Malta with Down Syndrome is part of the group. Due to the ongoing pandemic, the Association switched to a digital campaign that started on March 1st. Each day a common misconception was uploaded to their social media, along with a fact to clarify the myth.

Marija explains, “another misconception is that just older mothers have babies born with Down Syndrome. Although risks do increase with age, it’s not the case for everyone. I was just 20 when I had my son. When I had him, many people thought he was my mother’s child. He is truly no burden and is just as precious as our other two children; he just has to work a bit harder to get the same outcomes as other kids. We treat him just the same as the others. If anything, we appreciate the little things and achievements even more and don’t just cruise through life.”

In generations gone by, and not that long ago, people with Down Syndrome would not have been educated. There was no thought of employment, and they were usually hidden away. Marija explains that although things in the world of work are improving, we still have a long way to go.

“With every year that passes, the expectations of a child born with Down Syndrome are rising all the time. It’s not a false expectation; the life of someone with Down Syndrome is meaningful and fulfilling, and World Down Syndrome Day helps raise awareness of that.”

The awareness day is also known as “Lots of Socks”. You may have seen people uploading photos of odd socks on this day. Lots of Socks day aims to raise awareness of Down Syndrome and promote discussion.

What can you do to be part of the fun?

Chose a day in March (close to the 21st if you can). Ask your workplace, school, community group, family or friends to wear brightly coloured socks. On the day, wear your bright socks, take lots of pictures and share with the world by using the hashtag #lotsofsocks and follow Down Syndrome Association Malta on Facebook or Instagram for further support and information.

Essien Mifsud