A butterfly that wants to fly!

Imagine a beautiful 16-year-old girl. She loves creativity – enjoys photography, video editing, draws, dreams leads her page on Instagram... She loves to communicate with peers (probably more online), and her eyes are big and beautiful... Meet, this is Ania, and it is called "butterfly". But no, not because this is her beautiful nickname, but because Ania is very sick and her illness is incurable. Look at her skin: why is she wounded? And why fingers on hands and legs fused together? And why in Ania's eyes so much sadness? Epidermolysis bullosa is the name of the diagnosis that the girl made when she was born. 

"Ania was born on December 5, 2002, in the morning," says her mother. "I myself and the doctors noticed cracks on her hands. On the same day, Ania was transported to the Donetsk Children's Clinical Hospital, where we learned about our diagnosis. That day, my whole world turned upside down and became black and white". Until the age of 14, the girl was treated with medicines that were far from Ania's disease; wounds were tied up with ordinary bandages, they often stuck and they were painfully removed, ointments and solutions were bought by the mother at the pharmacy and guided by the "fit or not fit" method. But Ania, in addition to bandages and ointments, requires expensive medical nutrition: a mixture of Resource Optimus and Nutridrink or Kubitan yogurt, because Ania has 3-degree protein-energy deficiency.

Ania loves to draw, watch various TV shows, is interested in filming and tries to shoot and edit herself! About herself, Ania says: "My hobbies are drawing art-pictures, shooting and editing mini-clips, and most importantly, this is a photo, I love to photograph everything, I see the beauty in everything. I’m even going to finish the photographer’s courses after school. Dreams... I have a lot of them, but now I dream of a convenient one – a camera for my hands, but, unfortunately, I haven’t yet found such an easy, convenient and good-quality camera". 

The family of the girl is small: mother, sister, grandmother. They live in Donetsk region and really need support. Ania’s illness is incurable, but we can make it less tangible. Let's help Anai to make such dreams so far today!..

Name: Filippova Anna, 05.12.2002

City: Velikaya Novoselka, Donetsk region

Diagnosis: epidermolysis bullosa, dystrophic form, protein power failure 3 degrees