A FAMILY from Somerset are taking part in a very special video for World Down Syndrome Day.
In 2018, 50 mums and their children started a phenomenon by creating a carpool karaoke video to the song A Thousand Years.
The video – which had millions of views - was created to shift people’s perception to children with Down Syndrome.
From there the charity Wouldn’t Change A Thing was born and its aim is to raise awareness and acceptance of Down Syndrome.
This year, the group are launching a new carpool karaoke video tonight (March 14) to the song ‘We Are Family’ by Sister Sledge.
Samantha Gee, from Wiveliscombe, became involved with the charity a few years ago because of her daughter, Pippa.
“The charity is to help parents who have the diagnosis before child is born or afterwards,” she said.
“The initial reaction to Down Syndrome is very negative and the message we are trying to send is that Down Syndrome isn’t the terrible thing that everyone makes out.
“This year, we have taken a different approach and involved the siblings of the children with Down Syndrome. We want people to realise that having a sibling with Down Syndrome is cool and that other siblings won’t be left out.
“Having a child with Down Syndrome has boosted our family and given our other two children a different view on life. It has made them more empathetic and given them more opportunities. Pippa’s sister, Jemima, has become very interested in learning Makaton sign language and the girls do a lot of activities together – such as dancing and guides.”
The videos help to change perceptions of having a child with Down Syndrome. The group is also aiming to get language changed. For example, asking health professionals to stop saying “we are sorry to tell you…” and change the word “risk” to “chance”.
“What we really wanted to do is increase the choice for women when they are told their child has a chance of being born with Down Syndrome,” added Ms Gee.
“It is very long road and trying to get attitudes and perceptions and horrendous language changed. But some of the language used in the NHS has already changed and there are a lot more positive awareness groups out there.
“We found out that Pippa had Down Syndrome while I was pregnant and so we had 20 weeks or so to get our heads round it.
“I have a cousin who also has a daughter with Down Syndrome so I knew a lot about it and my perceptions were already quite positive. But of course it was still a shock because you don’t expect it to happen.
“I do wish I had more people to talk to - I only had my cousin - but now there are so many groups to contact and ask for information and advice.
“And now being part of this group, has enabled me to make new friends with people who also have children with Down Syndrome.
“Before I joined the group, I was a blogger trying to raise awareness with social media posts and so on. A single voice is hard to get people interested, by joining up with other people it makes us much more powerful, it seemed like a logical thing to do.”
World Down Syndrome Day is on March 21 – because Down Syndrome is caused by having three copies of chromosome 21 – but they are releasing their new video a week early.
Pippa, Jemima and their brother Dougal are all involved in the video. You can view it on the Wouldn’t Change A Thing website, www.wouldntchangeathing.org, at 7pm tonight.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here