Life as a Child with a Chronic Condition
A chronic condition means a type of illness or disability which will be a part of your life for the rest of your life, and will mean medication or other type of medical treatment such as physiotherapy (exercises designed to treat and strengthen your body) and regular visits to the doctor or hospital or both.
If you’ve been diagnosed with a chronic condition, it can be scary and upsetting. You may not know what was happening, and you will probably have lots of questions. We spoke to Tina, who grew up with a chronic condition on what’s learned over the years, and asked her advice on living well with a health condition.
Twirling Skye
My name is Skye, and I am eleven years old. I belong to Riverside Reflections, which is a baton twirling team.
My mum teaches us how to twirl, and sets our routines for us. She started twirling when she was five years old, which is quite a long time ago!! I started doing it properly when I was about five.
If you don’t know what twirling is, I’ll try to explain. A baton is a metal stick that is weighted at both ends, and has rubber to cover these ends. It is quite heavy, and hurts if it hits you, so you have to practise lots so you don’t drop it on your head!
Lots of Socks for World Down Syndrome Day
Do you sometimes wear non-matching socks? When you can’t find ones to match or just because you want to? Well on the 21st March you have the perfect excuse to and Agi is going to tell you why.
Agi has been making videos about her life with her little sister, who just happens to have Down Syndrome, for many years. We asked her to tell us more about this condition, and about life with Magdalena and to share some of her videos with us.
Firstly though who am I?
I’m called Agnieszka (Agi for short) and I am home educated with my little sister Magdalena, who is 7 years old. I have a website which I blog on about our life together and anything else I am interested in. I want to be a filmmaker when I’m older, and you can view lots of films that I’ve made on my website, and Magdalena wants to be an artist. She is one of my best friends. We have loads of fun together, and I don’t treat her any differently or treat her ‘specially’, even though she happens to have Down’s syndrome. Which is where the lots of socks come in…but first, let me explain.
I would never have known this unless my little sister, Magdalena was born with an extra 21st chromosome.
Have you worked out yet why World Down Syndrome day is on the 21st of March?
It’s because people with Down syndrome have three chromosomes on chromosome number 21, instead of the usual two. This is also known as Trisomy 21.
Why is it Called Down’s Syndrome?
So why call it Down’s syndrome? No, it’s not because people with Down’s syndrome are ‘down’ or grumpy, it’s actually because Dr John Langdon Down discovered the condition, and it was named after him.
Lot’s of people my age don’t know what Down’s syndrome is, (actually lots of adults don’t either) and that can make them scared of what they don’t know about, so they ignore Magdalena or talk ABOUT her instead of TO her or say something unkind thinking she won’t understand or be hurt by it. So before I get onto the socks, I want to tell you a bit about what Down’s Syndrome is and what it isn’t!
So You Want to be a … Diplomat?
