Åževin's biography

When I met Åževin (rare disease epidermolysis bullosa) a few years ago, I was very touched by this special girl who radiates so much strength, Beauty and joie de vivre. Seeing the sparkle in her eyes, her enormous joy and gratitude Gratitude touched me deeply. A year ago ÅŸevin was in such a bad way that her parents were afraid of losing her. At that time i learned from Åževin that she wanted a biography.

"A biography about me and my life - so that my story lives on, even when I'm no longer in this world."

so we did everything we could to fulfill Åževin's wish. Via a KMSK crowdfunding campaign and our social media channels, we wanted to raise the money for Åževin's wish together. We managed to do so thanks to great sponsors, media partners and two foundations who wanted to fulfill Åževin's wish together with us.

We were able to count on journalist Barbara Stotz Würgler to help us realize it. She took a lot of time to conduct numerous interviews with Şevin and her family in Basel her family in Basel. Photographer Sandra Meier has known Şevin since 2018, when we portrayed the Oecal family in the 1st KMSK knowledge book "Rare diseases - insights into the lives of affected families". Now Sandra has once again conjured up very touching pictures of Şevin and her family. Both succeeded in gaining the trust of Şevin and what came out of it can be read and seen in the biography to read and see.

I am very pleased very pleased that Åževin's wish has been fulfilled and that a happy happy smile on her lips!

Sincerely

Manuela Stier
Founder and managing director
Support association for children with rare diseases

Winner of the Viktor Award 2021 as "Most Outstanding Personality in Swiss Healthcare"

Link Biography Åževin (2022) Download
"Beautiful, strong and vulnerable: Her life with butterfly disease"


Order the biography
You can order the biography here free of charge. However, we are happy about a bound Donation for Åževin (IBAN CH52 8080 8008 5328 0369 7).

Print run
3 000 copies German

Videos and technical articles by Sevin
https://www.kmsk.ch/medienpraesenz/medienpraesenz-seltene-krankheiten