Let’s help Tarik: a “butterfly” boy

This story is of Tarik (11 years), a Bosnian child: a baby butterfly. They are called “the butterfly children”, because the fragility of them skin and because them mucous membranes are equal to those of the wings of a butterfly.
Tarik is a child suffering from “Epidermolysis Bullosa”, a rare hereditary genetic disorder which exposes him to the risk of injury even with a simple caress.
This child is a fighter. Every day he has to fight a terrible battle for his life on the front that is his own body.

Suffering from this disease is a real ordeal. Throughout his life, this child is forced to deal with several hours of daily dressings and bandages, with continuous antibiotic therapies, to combat the danger of infection of open wounds, always requiring repeated interventions of esophageal dilatation and reconstruction of the hands (which tend to close quickly, almost completely preventing the use of his fingers) as well as the lurking risk in nephrologic complications or skin cancers. They contribute to psychological repercussions and a decreased quality of life. The skin manifestations are more visible but other parts of the body are affected such as internal mucous membranes (mouth, eyes and throat) that can cause blisters, causing problems with swallowing and feeding.

Tarik can’t run and play. He can’t walk or keep anything in his hands due to the blisters that plague and afflict him.

Tarik must be nourished through liquids because of blisters on his mucous membranes.

Tarik suffers greatly from all the blisters and sores covering his body. When we met Tarik he had stumps for legs that were wrapped in towels instead of sterile gauze.

Tarik lives in a remote village of Bosnia, Herzegovina, in an honest but poor family. His parents try in every way to meet his medical expenses with the few economic resources available.

Tarik needs special ointments, oiled gauze, bandages and antihistamines. He must make a visit to Italy in Rome at the paediatric hospital Bambino Gesù (the only hospital in Italy and perhaps in all of Europe to treat children suffering from this rare disease). He needs blood tests and possibly surgery.


If you want to help Tarik:

1. Payment by postal account no. 46934337 payable to Associazione Fabio Vita nel mondo ONLUS

2. Bank transfer to the current account:
– Banco Posta n ° 000046934337 registered to Associazione Fabio Vita nel mondo ONLUS
IBAN Code IT89R0760101400000046934337

– Deutsche Bank no. 821007 payable to Associazione Fabio Vita nel mondo ONLUS
IBAN code IT69Z0310401401000000821007

3. Non-transferable bank check made out to Associazione Fabio Vita nel mondo ONLUS and sent to the Association’s headquarters in Genoa – C.so Sardegna 44/9 (Italy)

Tarik al campo estivo del 2013, a Cavi di Lavagna
Tarik a Genova

La storia di Tarik