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Charlie Fien-Emlen: Passionate Advocate for Those with Down Syndrome

By Leslie Sholly

In many ways, Charlotte Fien-Emlen is a typical young woman. When I first spoke with her, she was planning her wedding, and in our last email exchange she was worried about taking her college exams.   

But most young women have not given speeches about abortion before the United Nations, as Charlie—the name she prefers—has. And Charlie is also neurodiverse. “I have the most common type of Down syndrome where all my cells have the extra chromosome, not just a few like Mosaic DS,” she explains. “I get accused a lot of being Mosaic, so I always end up showing people my blood results that prove I’m not Mosaic. It’s annoying that I have to do that, but it educates people to see not everyone with DS is the same. We are all different just like people with 46 chromosomes are.”

Early life

Charlie was born 26 years ago in London, England, and grew up in Chelsea with her parents and four brothers. Charlie is the middle child. Her parents learned of her diagnosis six months into her mother’s pregnancy. Charlie says, “The hospital tried to bully Mum to abort me. In the UK you can abort up to birth for Down syndrome. The hospital kept making appointments to abort me even after Mum told them a million times she was having me.” 

When she reached school age, Charlie attended the Roche School in London. It is a private school, and Charlie was in regular classes there. She says, “I was the only student with Down syndrome at my school. I loved the Roche School, and I did well there. I got invited to lots of birthday parties and had sleepovers with my best mate Izzy. We are still friends.” 

Charlie’s parents explained her diagnosis to her when she was about eight years old. At first, she was reluctant to accept it. “I thought about it a bit and said ‘NO I don’t have it. I have UP syndrome.’ That was pretty much it. I kept denying I had Down syndrome until I was about 14. Then I decided it was cool to have Down syndrome and autism. I have both.” 

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