21 June 2010
Danila’s mom, Irina:
We had to go through a lot of painful situations before we got the correct diagnosis. My little son spent a month in intensive care when he was only 12 months old. He stopped walking, lost a lot of weight, I couldn’t help crying every time I looked at him. That time we spent 3 months in a hospital, it was there that I learned these new scary words — cystic fibrosis. I don’t even want to describe what we felt when the doctor was disconnectedly telling us about the disease. The main point was that there is no cure for cystic fibrosis yet, and our goal is to support our son until they finally find the cure.
Now Danila is in the fifth grade, he is a good student. He likes drawing, roller and ice skating. He grew up and his condition stabilized. But two years ago doctors found Pseudomonas aeruginosa in his lungs. Then it responded well to many antibiotics, best of all to tobramycin. That medication was expensive, around 100,000 rubles per month. We could not afford to buy it. Since 2010 this medicine is in the list of drugs that come with a discount and we hoped we’d be able to cure Danila’s lungs. We started preparing all the necessary documents for the discounts and all the necessary tests. Unfortunately it turned out that now our son does not respond to tobramycin anymore, only colistin can help.
What do we do now? Wait until they also include colistin in the discount list? If we don’t fight the infection right now, Danila is not going to hang in there long. One course of treatment with colistin costs 191,160 rubles (6214 US dollars). Our family cannot afford to buy it. Please, help us!