Dear family and friends,

 

We are asking for your help in order to support Milos’s battle against epidermolysis bullosa, a very rear disease that causes fragile and blistering skin. Children with epidermolysis bullosa are frequently referred to as “butterfly children” as the fragility of their skin is comparable to butterfly’s wings. This 3-year-old angel has been through many challenges in his life including various tests, procedures and even surgeries to separate his fingers. He has blisters all over his body including inside the mouth and throat that can be very itchy and painful. Skin care is managed by ointments and special bandages to protect the skin and prevent wounds from getting infected. Due to swallowing difficulties, a feeding tube had to be placed in his stomach to enhance nutrition, which requires use of special formula that is extremely expensive. Milos is a very happy child and he enjoys playing with cars just like his peers. However, his functional performance is also affected by decreased endurance requiring use of adaptive stroller and other adaptations that help Milos enjoy his childhood as much as possible.

 

Milos has been selected to participate in development of experimental treatment for epidermolysis bullosa at Stanford University in California. Participation in this program requires multiple trips from Slovenia to USA. Donations will be used to assist with purchasing medical supplies and covering other expenses associated with these trips. Thank you very much in advance. May God bless you all!

 

Draga rodbino i prijatelji,

 

Molimo vas za pomoc da podrizmo Milosa u borbi protiv bulozne epidermolize. Deca sa buloznom epidermolizom se cesto nazivaju “deca leptiri” jer se osetiljivost njihove koze moze uporediti sa osetljivim krilima leptira. Ovaj trogodisnji andjeo je prosao mnogo poteskoca u zivotu ukljucujuci razne testove, procedure pa cak i operacije da mu razdvoje prstice na rukama. Ima plikove po citavom telu ukljucujuci usta i grlo koji mogu biti bolni i izazivaju svrab. Nega koze ukljucuje koriscenje krema i specijalni zavoja koji stite kozu i sprecavaju da se rane inficiraju. Zbog otezanog gutanja, tuba za hranjenje mu se morala staviti u stomak da doprinese ishrani, sto zahteva koriscenje formule koja je veoma skupa. Milos je izuzetno srecno dete koje voli da se igra sa auticima kao i njegovi vrsnjaci. Nazalost, njegov dnevni zivot je takodje ogranicen brzim umaranjem sto zahteva koriscenje posebni kolica i drugih adaptacija koje pomazu Milosu da uziva u deteinjstvu koliko je to moguce.

 

Milos je izabran da ucestvuje u razvijanju ekspeirmentalnog tretmana za buloznu epidermolizu u Stanford Univerzitetu u Kaliforniji. Ucestvovanje u ovom programu zahteva nekoliko poseta iz Slovenije za Ameriku. Donacije ce se upotrebiti za kupovanje medicinske opreme i ostali troskova povezani sa ovim putovanjima. Hvala unapred svima. Bog vas blagoslovio!