Today we hear from one of our WCAT 2020 ambassadors, Claire-May Minett. She tells us about the importance of community, kindness and what being an adult with Mosaic Down Syndrome in today’s world means to her. Thanks Claire-May for sharing your story with us.
For those who don’t know my name is Claire-May Minett. I am the only adult in the UK with Mosaic Down Syndrome who strives to create awareness for this rare condition.
It’s a struggle to keep my awareness going as I have online and word of mouth awareness updates, it’s tricky to juggle. So many times in different places in England I have visited I have been able to tell some people about it. I’m damn proud of myself when it happens. It always boosts my moral.
The Mosaicism in me creates a vivid imagination and a cracking personality. My weaknesses that I am not ashamed of telling you are maths, communication with non emotional people and professional jargon as in worded letters.
I am so proud to be a member of this community as it has given me a purpose to be an inspiration for others to know that their children can lead full lives just like everyone else. I am so glad I can be that person to help, support and inspire others to know that this world isn’t as scary as you think. It all depends on your point of view. Granted, in these corona times it’s very difficult for us to understand what’s going to happen. However with us being such a close knit community I know I have found my family and home. I do not need anything else.
This is the time for compassion and kindness for anyone to let people know that we are there for them.
Thing is though you wouldn’t think it but there is more than just 3 types of Down Syndrome.
- Down Syndrome – Trisomy 21 happens in every cell giving the person the extra chromosome.
- Mosaic Down Syndrome – is where some of the cells have trisomy 21’s and the others don’t… so that’s why it’s called Mosaic as it determined by percentage of cells. Mine is now 27%.
- Translocation Down Syndrome – is where one cell line is attached to another which happens through all the cells
- Mosaic Translocation Down Syndrome – which is the same as the two cell lines attached to each other but it does not occur in all of the cells.
- Micro Deletion Down Syndrome – is where there is a deletion of cells resulting in the karyotype 2.5mb
The UK has its ways and is not always understanding of the differences due to the fact of societal ignorance to the stigma of the Down Syndrome umbrella. We all know that most people nowadays have something different from the next. I affectionately like to call it the people syndrome because one person may have autism and the other fibromyalgia. We all have something to give to the world and no matter what status we are (regardless of class) we should be able to respect and be kind to each other. I believe some in a higher class bracket might believe they are better than others, but better than what?! I believe in spiritualism and equality. I believe that no one should feel different from the next.
Sally Phillips once said “We are different but we are still the same”. I totally agree with this statement, granted we all have our different ways in coping but we still eat, poop, drink, wee, bleed and breathe. No status should discriminate. Ego encompasses the badness in a personality.
So please know that someone maybe going through something that you don’t know. Treat them with kindness and you will receive it back. I am a big believer of karma and law of attraction. I have come a long way growing up and I trust that with my part of this community I can be a great inspiration to others.
Claire-May