We are mum and dad to 2 lovely daughters, one of whom happens to have Down (or Down’s) Syndrome, also known as Trisomy 21 and abbreviated in medical notes as 3*21.
Our reason for creating this site is to add to the growing network of similar websites, blogs, social media and voices of people who want to project a more modern view of what it is like to have Down Syndrome today. I know how outdated and misinformed my own perception was – I can only give myself the excuse that I grew up without any experience of anyone with a different skin colour, let alone ‘a disability!’ Thankfully, over the past 20 years or so things have changed for the better – think how different YOUR life would have been if you were institutionalised, segregated, refused basic healthcare and education? Thankfully, these are a thing of the past, so that people born with DS are now living fulfilled, ordinary and extraordinary lives! Also, just as importantly, thanks to integration, the next generation are growing up all together – a melting pot of mixed races, mixed religions, mixed abilities/ disabilities, which breeds a new culture of understanding and acceptance, rather than fear and suspicion.
I personally think the future is bright…..but we still have remaining negative stereotypes to right…..I believe that it is this ignorance, more than anything else, that leads to the current statistic of only ~6% of babies with DS making it into this world (read: Abortion on The Grounds of Disability and Nuchal Fold Scan on this site).
I hope that this site might be useful to anyone looking for information, support, guidance, a real-life viewpoint. I was ignorant and afraid when my unborn child was diagnosed with the condition at 12 weeks pregnant. I’m glad to say that in the 10 years she has been here, she has educated me and well and truly put me right! I am certain she will live life to the full, achieve great things and be happy, and perhaps most importantly, under her own steam.
Why “we ‘suffer’ from Up Syndrome”? We often see mainstream media referring to people ‘suffering’ from Down Syndrome. This is very misleading, suggests that you should feel sympathy for the person, places them in a negative and inferior position and is rather patronising! Of more concern, is the subtle and dangerous message that you might be doing them a favour if you prevented that ‘suffering’ in the first place…..For a much more succinct discussion of societies hang-ups, read “The Politics of Down Syndrome” by Kieron Smith by Zero Books (summary on the Soapbox page here).
But in short, that extra chromosome is just something some have been born with, like the colour of their skin/hair/eyes, it is not something they ‘suffer from.’ Yes, there are medical issues that are more common for people with DS, but these are not a given. Most can be treated with modern medical technology, just as for anyone else. We have flipped the name of the syndrome on its head, because for our family, we feel ‘Up’ not ‘Down’!
If you have any questions, please get in touch. Email: info[at]3star21[dot]co[dot]uk. If you wish to read all the latest updates here, please register – button at top right of this page.