Families and friends will be gathering today to mark a special occasion.
It is ‘World Down Syndrome Day’ – an officially recognised date for celebrating the lives of people with Down syndrome with the aim of ensuring they have the same freedoms and opportunities as everybody else.
This year in Guernsey the occasion is being marked with a low-key event organised by the Guernsey Down Syndrome Group – which has in the past organised an annual fete to raise awareness of and money to support people with Down Syndrome in Guernsey.
Helen O’Hara is Chairperson of the charity.
“I’m involved with the group because my son has Down syndrome and I am now the Chairperson having taken over from Kim Marquis, who also has a daughter with the condition,” explained Mrs O’Hara.
“We are focused on education,” she said of the charity – which currently has members aged between four and 45.
“We also try to get together as often as we can, organising meals, painting, and doing suitable outings for the adults of the group.
“We like to get together as the one thing we all have in common is having a family member with Down syndrome and we can have a chat, as we can all relate to one another.”
Mrs O’Hara said there are currently 19 families in the Guernsey Down Syndrome Group – but ten years ago, she didn’t even know it existed.
“When I had Fletch, he was very poorly,” she remembers.
“We were in Great Ormond Street Hospital, and I had an unexpected phone call from another mum, Trudi, and she had heard of me and said we are here when you get home and it would be lovely to meet you and Fletch.
“That was a great comfort,” she said.
To ensure more families know about the Guernsey Down Syndrome Group, its members work on raising awareness as well as raising money to pay for activities and support tools for their members.
“We now have leaflets in doctors’ surgeries and a gift box at the hospital for any other children who are born with Down syndrome.
“It’s there to congratulate the parents and it has all of our information in it. That’s only if anyone wants to contact us of course, but we will always be happy to hear of new babies being born.
“We would like people to know about our group to get more awareness out there.
“Years ago people would probably think that children and adults with Down syndrome couldn’t do many things, but that’s not the case.
“We have adults with jobs, and some who have gone away to live, some of the children can read and write, and my son has the funniest sense of humour.”
What is Down Syndrome?
Also known as Trisomy 21 (Wikipedia), Down syndrome is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21.
Down syndrome is usually associated with developmental delays, mild to moderate intellectual disabilities, and characteristic physical features. People with Down syndrome can have poor immunefunction and have an increased risk of health concerns, such as congenital heart disease, epilepsy, leukaemia, and thyroid diseases.
Down syndrome is the most common chromosomal abnormality, occurring in about 1 in 1,000 babies born worldwide.
Down syndrome can be identified during pregnancy by prenatal screening, or after birth by direct observation and genetic testing. There is no cure.
The syndrome is named after British physician John Langdon Down, who dedicated his medical practice to the cause.
He first described Down syndrome in 1862, recognising it as a distinct type of mental disability, and again in a more widely published report in 1866. By the 20th century, Down syndrome had become a widely recognisable form of mental disability.
Some aspects were described earlier by French psychiatrist Jean-Étienne Dominique Esquirol in 1838 and French physician Édouard Séguin in 1844. The genetic cause was discovered in 1959.
World Down Syndrome Day
World Down Syndrome Day was created to celebrate the lives of people with Down syndrome and to make sure they have the same freedoms and opportunities as everybody else.
21 March (21/3) matches the 3 copies of chromosome 21. This is unique to people with Down syndrome.
World Down Syndrome Day has been an official part of the United Nations calendar since 2012.
The theme for this year’s World Down Syndrome Day was ‘Together Against Loneliness’.
While everyone feels lonely sometimes, for many people with Down syndrome and other intellectual disabilities, loneliness can be a more common and painful experience.
Their families can feel lonely too and feel cut off from support.
This is something the Guernsey Down Syndrome Group works to alleviate all year round with its main objectives including helping children and adults to thrive, increasing awareness and understanding of Down syndrome, and organising events such as cookery lessons, surfing, art, swimming, and more.
The Guernsey Down Syndrome Group
The Guernsey Down Syndrome Group is registered with the Association of Guernsey Charities.
Its objectives are:
- to help with education
- to help children and adults thrive
- to increase awareness and understanding of Down Syndrome
- to organise presentations and different activities such as cookery lessons, surfing, art lessons and swimming
To contact Mrs O’Hara the Guernsey Down Syndrome Group email guernseydownsyndrome@outlook.com.