PODACI ZA UPLATU :

BANKOVNI RAČUN :
Ime : Lava Petrušić
IBAN : HR5024840083120778121
BIC / SWIFT : RZBHHR2X
POZIV NA BROJ : HR99 / HR00

OPIS PLAĆANJA : za ratnicu Lavu

ADRESA : ULICA MATIJE GUPCA, 10290, ZAPREŠIĆ

PAYPAL : [email protected]

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GoGetFunding :

Bankovni račun :

Lava je dvogodišnja djevojčica koja boluje od razarajuće bolesti - SPINALNE MIŠIĆNE ATROFIJE.

Dijagnostikom početkom godine krenula je borba nas kao roditelja kako bismo došli do revolucionarnog lijeka naziva Zolgensma. Genske terapije koja se prima jednom u životu, a djeci diljem svijeta donosi ogroman rezultat, zaustavlja progresiju bolesti i daje im mogućnost za život u kojem mogu - samostalno disati, gutati, žvakati, pomicati ruke i noge, primati predmete, puzati, sjediti, stajati i hodati.

Jer sve to - djeca sa spinalnom mišićnom atrofijom bez lijeka ne mogu. Ostaju prikovani uz krevete i aparate.

Lijek je tu i postoji ! Lijek je pokazao revolucionarne rezultate, ali da bi došli do njega potrebna nam je tvoja pomoć !

Nakon sastanaka i sastanaka sa svim nadležnim tijelima Republike Hrvatske odlučili smo samostalno prikupiti enormo velik iznos jer nam vrijeme curi i odmiče, a Lava postaje sve veća i veća.

Lava ima rok do kad može primiti ovaj lijek, a on je limitiran kilažom. Lava nema vremena čekati da država promijeni pravilnike i krene ukorak sa drugim državama.

Humanitarna akcija "za ratnicu Lavu ‘ je akcija prikupljanja sredstava za lijek naziva Zolgensma i sav prikupljen iznos bit će korišten isključivo za plaćanje navedenog lijeka.

Lava is a two-year-old girl who suffers from a devastating disease - SPINAL MUSCLE ATROPHY.

With diagnostics at the beginning of the year, we as parents started our struggle to find a way for a drug called Zolgensma. Gene therapy, which is received once in a lifetime, and which brings enormous results to children all over the world, stops the progression of the disease and gives them the opportunity for a life in which they can - independently breathe, swallow, chew, move their arms and legs, receive objects, crawl, sit, stand and walk.

Because all this - children with spinal muscular atrophy cannot do any of that without medicine. They remain chained to beds and appliances.

The medicine is there and exists! The drug has shown revolutionary results, but to get there we need your help!

After meetings and meetings with all competent authorities of the Republic of Croatia, we decided to collect an enormous amount on our own because time is running out and Lava is getting bigger and bigger.

Lava has a deadline until which she can receive this medicine, and she is limited by weight. Lava does not have time to wait for the government and health care system to change its rules and keep pace with other countries in Europe, US and Canada.

The humanitarian campaign "for little warrior Lava ‘ is a fund-raising campaign for the medicine called Zolgensma, and all the money collected will be used exclusively to pay for the said medicine.