Wardle woman features in new campaign video for World Down Syndrome Day

Date published: 12 March 2019

A woman from Wardle who has a rare form of Down’s syndrome is featuring in a new campaign video about the condition ahead of World Down Syndrome Day on 21 March.

Diagnosed with mosaic Down syndrome in 1989, Claire-May Minett, 40, an advocate in raising awareness of her condition, features in the new Wouldn’t Change a Thing campaign video, ‘Don’t Stop Me Now!’

Down syndrome is a genetic condition in which some, or all, of a person’s cells have an extra chromosome. People with Down syndrome have three copies of chromosome 21 in each cell, instead of two.

People with mosaic Down syndrome have a mixture: some cells have two copies of chromosome 21, and other cells contain three copies. 

Claire-May said: “I’ve been involved with the International Mosaic Down Syndrome Association since 2011. I am an inspirational person for our online community where we have lots of groups on social media.

“I found out about #wouldntchangeathing through one of our groups and I immediately got involved. Stacey Byrne, one of the trustees, welcomed me and asked if I’d like to take part in the video awareness campaigns. I said yes, because I am constantly fighting to make the UK know more about mosaic Down syndrome.”

The #wouldntchangeathing hashtag was popularised back in March 2018 by the viral video ‘50 Mums | 50 Kids | 1 Extra Chromosome’ – now regarded to be one of the most popular viral videos in history after racking up over 350 million views on social media and becoming headline news in over 30 countries.

Last year’s initiative gave birth to the Wouldn’t Change a Thing charitable organisation, which aims 'to create a world where negative, outdated perceptions of Down’s syndrome become a thing of the past'.

Speaking about her condition, Claire-May said: “I’ve been tested a couple of times and the percentage has gone up and down due to testing different cells. It affects me in the learnt social behaviour way, as when I was younger, I didn’t respond well to others and I was a slow learner. I have a unique personality and some people don’t understand me. Most people don’t understand how clever I actually am.”

Using the popular Queen song of the same name, the ‘Don’t Stop Me Now!’ campaign seeks to highlight the ways which people with Down syndrome of all ages achieve and enjoy life, challenging misunderstandings about the condition.

Some common misconceptions that people may have about Down’s syndrome include not being to have relationships, not being able to learn, that adults with the condition are like children, not being able to live independently or have a job.

Mairi Watkins, creator and project leader of the “Don't Stop Me Now” concept, said: "With the parental relationship being the focus of previous projects, I felt that it was time to build on this message by putting individuals with Down syndrome front and centre. ‘Don't Stop Me Now’ lets their fulfilling lives do the talking.

“It holds up a mirror to society and dares the viewer to challenge everything they thought they knew about Down Syndrome, and to think again.”

Wouldn’t Change A Thing World Down Syndrome Day Campaign ‘Don’t Stop Me Now’ will launch on Friday 15 March 2019, made with thanks to Singing Hands, Queen, Sony ATV and EMI.

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