Donation
For Sevin
Your donation makes it possible for Sevin's story to be told in a book
Since birth, Sevin has been affected by the incurable skin disease
Epidermolysis bullosa (butterfly disease) since birth; her skin peels off at the slightest
The slightest strain causes her skin to peel down to the deepest layers, resulting in scars like burns.
Her fingers and toes are fused together and she suffers from unbearable pain. Sevin can no longer go to school, write or draw, go out with friends and every movement causes enormous pain.
But Sevin has one big wish: she wants her moving story to be told in a book
she wants her moving story to be told in a book to encourage other affected children with rare diseases and their parents and to shake up society.
Photos: www.lisannevreeke.com
Sevin's life
Sevin's parents' Sevin's parents' happiness seemed perfect when their daughter was born in November 2005 after an uncomplicated pregnancy Pregnancy in November 2005. Hours after the birth, her parents noticed that Sevin had no skin on her feet Feet. "We were shocked and the doctors were at a loss," recalls her dad. The newborn was transferred to the intensive care unit and diagnosed with "butterfly disease" was diagnosed. The fact that Sevin had the most serious form of the disease Disease (around 30 people are affected throughout Switzerland) only became apparent over time only became apparent over time. Any strain can lead to injuries, severe physical physical disabilities and severe pain. The parents have feared for their daughter's life on several occasions. And despite this fate, fear and the immense challenges, Sevin's parents never give up - they fight for their daughter to have as normal an everyday life as possible, for her to be courageous and proud, full of self-confidence.
Sevin's illness
Epidermolysis bullosa - butterfly disease
EB is the abbreviation for epidermolysis bullosa, a genetic, currently incurable skin disease. The skin of people with EB is extremely vulnerable,
which leads to severe physical disabilities and pain. Because EB is congenital, the disease manifests itself at birth. Due to a genetic defect, the body does not produce a certain collagen at all or only inadequately
formed. This means that
the individual layers of skin do not
layers of skin do not hold together properly
painful blisters and cracks form under the slightest strain.
Self-help group: www.schmetterlingskinder.ch
Sevin's family thanks you for your donation
Sevin's journey through life is extraordinary: marked by unbearable pain, but also joy, courage and her tireless fighting spirit. Sevin's story is written autobiographically by the author Barbara Stotz Würgler in order to fulfill Sevin's heart's desire. At the same time, the biography is intended to raise social awareness and create attention for people who
who do not conform to the norm, who are special. People like Sevin - full of
inner beauty, confidence, a strong belief in themselves and the most beautiful smile in the world on their lips.
We thank you from the bottom of our hearts for making Sevin's heart's desire possible with your donations!
A song for Sevin
How great is this; the rapper Belerat has written and produced a rap song for Sevin. Listen to the motivating words with which he wishes the girl, who is affected by the very painful butterfly disease, a lot of strength.
A big thank you to the rapper Belerat (Instagram belerat_05), Sevin is super enthusiastic!
This song reached over 11,240 people on Facebook and has had over 1,190 interactions to date.