I’m Sevi. This is my story.


My name is Sevi. I am from Greece and I was born in Aug. 1992.

I was diagnosed with Gaucher, type 1, in 2013.

When I was born I had huge and fat spleen and liver. Also, I was always a thin child with low hematocrit but my pediatric doctor gave me only vitamins and didn’t understand that something was wrong with me.

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Feature: Illustration by M. Rooney, “Emma’s Garden: Growing with Gaucher” Digital Story

emma rooneyEmma’s Garden: Growing with Gaucher is one family’s global journey with Gaucher disease. The 10 minute digital story was launched by the National Gaucher Foundation of Canada, in 2013, at the Lysosomal Disease Network WORLD Symposium.

Emma’s Garden was produced by Emma Rooney and illustrated by Megan Rooney. Emma lives with type 1 Gaucher disease and she prepared her digital story as a gift to her family and all the incredible people who have contributed to her growth and well-being.
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