Father of seven-month-old baby with cystic fibrosis in front of the FBiH Government: They are wasting our time!

(Patria) - Parents of children with cystic fibrosis came out for new protests in front of the FBiH Government today.

Mirsada Softić, mother of six-year-old Nedžma Softić, addressed the media.

"We are here today because we were promised that we would get medicine for our children, that their lives would become a little easier, that they would be able to live longer than 20 years. All of that remained an empty promise. This medicine, at the very least, stops the progression of the disease, which means a lot to us. My seven-year-old girl receives four inhalations; in five years, if we are lucky enough for her to live that long, she will receive seven, and she will receive additional therapies. Her liver, pancreas, and lungs will gradually start to fail; her lungs are getting worse and worse each time. I cannot explain to her why I am here today. The day we were at the protest, she was there; I had to explain, I had to tell her that she would live a short life, I had to say why I was there that day. She got some hope that she would get that medicine. Today, I did not have the strength to tell her why I am here," said Softić.

The Prime Minister of the Federation of Bosnia and Herzegovina, Nermin Nikšić, withdrew the budget rebalance from the parliamentary procedure of the House of Representatives of the PFBiH at the last session, in which two million KM were planned for the purchase of the drug Kaftrio, intended for children with cystic fibrosis in the FBiH.

In the FBiH, 28 children suffer from cystic fibrosis, and the drug Kaftrio, which costs 250,000 euros, is their only salvation because it prolongs their lives.

The father of seven-month-old Iman, who was diagnosed with cystic fibrosis, told a heartbreaking story to the media.

"In those moments when you see your child's blood, there is no more terrifying sight. I am a mining engineer, I work underground, but these fears cannot be compared. A million thoughts run through my head. One is what is happening to little Iman, and the other is what is happening to my wife. All this stalling is a waste of time," said the father of little Iman.