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I Love My Sister No Matter What

This is the beautiful, humbling story of two sisters who share a world of fun, adventure and kindness. Oh, and one of them has Down’s syndrome… not that she lets that get in the way of her ambitions. Agi, 12, shares her story here with teen magazine Top of the Pops, explaining to readers that Magdalena, eight, has Down’s syndrome, but that’s something to be celebrated. Agi is a budding filmmaker and has been making documentaries about Magdalena for years. 

The films are a great success (have a look at Agi’s YouTube channel: Agi K) and help educate the next generation about the misunderstandings around Down’s syndrome. Agi and Maggie were delighted with their feature in Top of the Pops and Agi put her fee towards a new camera….
You can read more here…

“I love my sister no matter what.”
Agi’s story:
*Her little sister was diagnosed with Down’s syndrome when she was a baby.
*Shocked by people’s ignorance about Down’s syndrome, Agi was determined to show the world the person behind the Down’s syndrome.
*Agi started making films about her sister and posting them on YouTube.
*The sisters are now a YouTube hit. Their own channel has over 9000 subscribers and Agi’s Instagram feed has over 16,000 followers.
“I give up!” I shouted, jumping off the trampoline after failing to master the backflip I’d been trying to do all day.
“No, don’t give up. You can do it Agnieszka,” my little sister, Magdalena, eight, said. “You’re really good at the trampoline.”
Magdalena never lets me give up. She’s so encouraging and when I want to throw in the towel and do something else, she’s there to remind me I can do anything, because she believes in me.
We do everything together and she makes me want to be a better person. But not everyone realises how amazing she is, which is why I’ve set out to show the world the Magdalena I am lucky enough to see every day.
I was three years old when Magdalena was born. Our mum, Anita,  now 48, had a home birth and I was one of the first people to hold Magdalena. I don’t remember worrying about there being something ‘wrong’ with the baby – I was just so excited to meet my lovely little sister.
It’s only been in the last few years that I’ve started to ask questions about exactly what Down’s syndrome is. We all have 23 pairs of chromosomes in each cell in our bodies, but people with Down’s syndrome have three on chromosome number 21, instead of the usual two. This is also known as Trisomy 21.
But really, Down’s syndrome is just a term to describe a set of possible symptoms for people with this chromosomal condition. Mum set up a support group for the Down’s Syndrome community in our area when Magdalena was a baby so we know lots of children with Down’s Syndrome. And they’re all different, just as we are all different.
I grew up bearing aware that Down’s syndrome meant Magdalena would have learning difficulties and as she has hyper-mobile joints, she gets tired easily and has weak muscles. But as she got older, I could see that the characteristics that shone through were perseverance, determination, inquisitiveness and kindness. She also takes my camera into her bedroom without asking and takes hundreds of photos of all her toys – like all sisters, we argue! But we make up. It’s hard to stay mad at Magdalena for long.
By the time I was eight years old, I’d developed a passion for cameras, photography and filmmaking. I’d get Magdalena to act in my films. We’d dress up as Jack and the Beanstalk then film a play.  We just did it for fun. Then in 2010 Mum spotted a competition on Net Buddy for people to make a three minute film about disability. I entered, putting together some footage I had of Magdalena.
I didn’t think anything would come of it, but I won first place.
The film had such a positive response and people were asking me if I was going to make more films. I realised I was in a unique position. I loved making films and in Magdalena, I had a star. I decided I’d film her all the time, and every January I’d put together a new film documenting our lives, her progress and personality.
I wanted the world to see that Magdalena is amazing and Down’s syndrome is nothing to be afraid of. Our first film had 17,000 views. I set up a YouTube channel called Agi K and through word of mouth and mentions on other websites, I soon had over 9000 subscribers.
Today, around 1 in 700 births result in Down’s syndrome. Until recently, people born with Down’s syndrome were put in institutions and weren’t allowed in mainstream schools. This terrible treatment from society is why there’s still a lot of misinformation around.
People assume all people with Down’s syndrome love hugging and are happy all the time. Magdalena is definitely not happy all the time. She’ll let me know if I’ve annoyed her! There is a common misconception that people with disabilities don’t have feelings and won’t know if you leave them out. But not only does it break my heart when Magdalena isn’t invited to a birthday party or play-date, it hurts her feelings too.
Magdalena and I, and our big sister Isabella before us, are home educated. Mum used to be an art teacher and we live in the beautiful hills of the Welsh countryside. Our education is based on encouraging the things we’re passionate about and the skills and knowledge we’ll need in later life. It’s also more flexible than school. If it’s sunny, we’ll go out into the fields and learn about lambs. If it’s raining, we’ll do maths.
I don’t think we’re missing out on anything by not going to school. We have lots of friends because we are involved in the community. Magdalena is a Brownie and I run a film club, as well as going to gymnastics, horse riding and swimming classes.
Thanks to my YouTube channel and website, I’ve developed friendships all over the world too. It doesn’t matter to me whether I meet someone in person or through the online community – once I’ve made a friendship, I’ll keep it for life. My friends are dotted all over the world, but we FaceTime and group chat.
My films about Magdalena are called My Little Sister (who happens to have Down’s syndrome.) I chose that name because I wanted to put across that she’s Magdalena first and foremost – Down’s syndrome is almost an afterthought. I film Magdalena baking, painting, playing in the garden. Nothing is set up or posed, it’s all natural. I get the best footage when we just forget the camera’s there.
I get so many lovely comments from people. It makes me so happy to know we’re changing perspectives all over the world.
I’m wary about negativity online but any negative commentators are immediately blocked – I haven’t got time for negativity. Just like I haven’t got time for people who are mean to Magdalena in real life – I refuse to even think about those memories because it would just make me sad. “It’s better to put positive imagery out there than have none at all,” Mum says. We know a lot of what you can find online about Down’s syndrome is wrong, negative and pessimistic and I’m trying to redress the balance.
People say I’m a good role model for Magdalena and she’s learning so much from me. But what they don’t realise is that I learn from her too. “Magdalena helps us look out for life’s treasures,” Mum says. She’s right.
Magdalena is obsessed with frogs and if she spots one when we’re in the garden, she’ll want to sit with it for ages, talking to it, making sure it’s okay. I’m always darting off to do the next thing – Magdalena teaches me to slow down and appreciate the small things in life.
“Your films are helping change the way the next generation think,” Mum says. She says I can do more than she ever could, because I can reach out to people my age, so that when we’re all older, our generation will make society a better place. I hope my generation grow up to realise Down’s syndrome isn’t a curse, it’s nothing to be scared of. It’s a blessing.
“I love your films, Agnieszka,” Magdalena says. “You’re a good filmmaker.” She has them all on her ipad and watches my music videos too. She holds the camera for me when I’m making music videos and I involve her in the editing, asking what effects or filters she thinks suit the footage. We’re a team.
Magdalena will always face challenges. Right now, it’s other kids and adults not involving her or talking to her. It drives me mad when people ask me how old she is or what she’d like to drink. I wish people would realise she can speak for herself. People don’t always see Magdalena how I see her. People don’t know what Down’s syndrome is and are scared by what they don’t know. That’s why our films are so important.
Magdalena and I love going on walks around the countryside. We watch films, jump on the trampoline, play with our lamb and rabbits. If I’m feeling sad, it’ll be Magdalena who cheers me up.
If our dad, Alex, takes Magdalena to the market on Saturdays without me, I miss her. Not being in the same room feels weird. That’s why, no matter what I do in life, I’ll have Magdalena by my side. Maybe one day I’ll be a filmmaker or music video director and I’ll travel the world. Not without Magdalena!  Magdalena wants to be an artist or photographer and I have no doubt she’ll succeed.
The way I see it, everyone has different struggles and weaknesses. Magdalena’s just happens to be Down’s syndrome. She also has plenty of strengths. People tell me they feel sorry for my sister. But the only time Down’s syndrome causes her pain is when it leads to her being left out or teased. It doesn’t stop her being amazing or having an amazing life. Magdalena is an inspiring person and I’m humbled to be her best friend. That she is my sister is just an added bonus.
Agi is currently working on a series of children’s books to accompany the films about Magdalena.