World Down Syndrome Day

Hayley Goleniowska by Hayley Goleniowska Additional Needs

Hayley Goleniowska

Hayley Goleniowska

I'm the founder of Downs Side Up. It started as a way of sharing our story and resources with other parents with a child with Down's syndrome. The...

World Down Syndrome Day sits within an awareness week on 21st March (symbolising the 3rd copy of chromosome 21 that is present in people with the condition).

Families and support groups, schools and workplaces choose to wear bright, funky socks to symbolise that we are all colourful and unique.

Others fundraise for local support such as speech therapy and early interventions for children, and the media is filled with stories that are at once ordinary and marvelous.

Bloggers and charities swap updated information as well as giving practical advice and support, and however we view awareness days or choose to spend them, we are agreed that what we are aiming for is for acceptance and equity for all.

This year’s theme is My Voice, My Community which features speeches from self-advocates around the globe.

In many ways these advocates are positively re-writing the narrative that surrounds Down’s syndrome. Their voices count.

I suppose that what I want most on World Down Syndrome Day is for society to look at each person and see them as unique individuals.

Not a set of stereotypes, a list of medical conditions or worse still co-morbidities, and not a one size fits all cookie cutter image of a type of person.

Our daughter Natty is funny and comedic, cheeky and stubborn, clever and gentle, her personality fills a room as soon as she arrives. But you have to meet her to know that.

You have to get past your preconceptions.

Sadly before most people get to meet someone with Down’s syndrome, if they ever do, they have to battle through a set of outdated myths that surround the condition.

Key Facts

So Firefly have helped create an infographic especially for World Down Syndrome Day 2017 in order to foster understanding, which you can see here..

- There are more than 4 million people living with the condition worldwide.

- Down’s syndrome is not a disease and it is not contagious.

- Down’s syndrome was first described by John Langdon Down in 1866.

- The most common form of Down’s syndrome is Trisomy 21, which is a chance occurrence.

- Rarer forms are Translocation and Mosaic Down’s syndrome, which can be genetic.

- Around 2 babies are born with Down’s syndrome in the UK each day.

- The use of the apostrophe in Down(‘s) depends on where you live in the world. Both are correct.

- Down’s syndrome is just one small part of a person’s identity. They are fully rounded individuals who experience emotions, mood, likes and dislikes just like everyone else.

- People with Down’s syndrome are not a burden. They do not suffer.

- 99% of people with Down’s syndrome report being content with their lives.

- 79% of parents say their outlook on life has improved since the arrival of their child with Down’s syndrome.

- 94% of siblings report being proud of their brother or sister with the condition.

- Children with Down’s syndrome can be educated in mainstream school, special schools or at home.

- The average life expectancy of a person with Down’s syndrome in the UK is around 65 years, with many living into their 70s.

- Many adults with Down’s syndrome lead independent lives with support, have jobs, homes and friendships and can marry if they wish.

So, this World Down Syndrome Day, lets move beyond the statistics, open our hearts and minds, and listen to the voices of the individuals who count: those who have Down’s syndrome.


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