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Down Syndrome Awareness Month | Interview with @the_mantons

October is officially Down syndrome awareness month where charities and families use this as an opportunity to educate people on information surrounding Down syndrome. More than anything, it's a celebration with a positive message that teaches people that children and adults with Down syndrome can accomplish anything they set their minds to. 

One advocate of awareness month is Helen - mummy to adorable toddler Eleanor - who uses instagram as a space to (in her own words) "... raise awareness for Eleanor and others like her to show there is nothing 'down' about Down syndrome" 

We've been following Eleanor's adventures for a while, so thought now was the perfect time to discover a bit more about the Manton family and learn some interesting facts and statistics from Helen. 

 

26 Oct 2020

October is Down syndrome awareness month, which gives families the chance to promote awareness. What’s something that people are usually surprised to hear about Down syndrome?

It would have to be how old I am, or how old I was when Eleanor was born. Surprise that I wasn’t an ‘old mum’. It is true that the probability of a mother giving birth to a child with DS increases with age, however mothers of all ages can have a child with DS. In fact, 80% of babies with DS are born to women under 35 years of age – simply because women in this age group have the most children!

Similarly, what is the biggest misconception people have about children with Down syndrome?

I think it would have to be that children with DS are always happy. That's the most common thing you hear when people spot Eleanor out and about or hear you have a child with DS. The fact is, people with DS all have their own personality traits. 

Do you have any facts and statistics you’d like to share to raise awareness?

I'd say the most important statistics and facts are - As recently as 1983 the average life expectancy of a person with DS was a mere 25 years old, today it's 70.

- 90% of babies with a pre-natal diagnosis of Down's Syndrome in UK are aborted 
- 100% in Iceland
98% in Denmark
- 77% in France 
67% in the US

To add to this, shockingly abortion law is massively different in the UK for a child with DS. You can terminate up to 40 weeks if you’re expecting a child with disability like DS versus 24 weeks where a condition has not been identified.

Also, language is a very important part of the DS community. An individual with DS is an individual first and foremost. The emphasis should be on the person, not the disability. A person with DS has many other qualities and attributes that can be used to describe them. e.g. Eleanor is 2 and has Down’s syndrome.

The most common type of Down syndrome is Trisomy 21. The other two types are Translocation and Mosaicism. What type does little Eleanor have?

Eleanor has Trisomy 21. This is by far the most common type, where every cell in the body has three copies of chromosome 21 instead of two.
With Translocation DS, each cell has part of an extra chromosome 21, or an entirely extra one. But it’s attached to another chromosome instead of being on its own.
Mosaic DS  is the rarest type, where only some cells have an extra chromosome 21.

Down syndrome leaves people with an increased susceptibility to associated medical conditions. Has Eleanor had any health setbacks?

Eleanor has a minor heart condition, which will be operated on in the very near future. Roughly 50% of people with DS can have heart conditions. That being said, fewer than one in five have a serious problem. Where children have a heart problem, it may be a relatively mild condition, or it may be a more serious complication that means the child will need surgery.

Eleanor is an absolute ray of sunshine and we have been following her on your Instagram for some time. What does she enjoy doing? Also, what’s your favourite thing to do as a family?

Eleanor adores being outside and playing or running around, whatever the weather. She's obsessed with the character Mr Tumble and loves to dance and sign around the living room whenever he appears on TV. As a family we love to go out on little walking adventures exploring the Warwickshire countryside where we live in nearby Royal Leamington Spa. Equally we love to snuggle down to watch a family film with a cosy roaring fire.

All images by @the_mantons

Follow  @the_mantons  | Instagram

Eleanor wears outfit by Mayoral at Childrensalon. Shop designer Mayoral HERE 

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