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Yulia and Sasha Nefyodova, age 4

Date of birth: 31 March 2007.
Shakhty, Rostov region, Russia.

Diagnosis: cystic fibrosis complicated by a Pseudomonas aeruginosa infection. The girls’ condition is extremely critical . A course of TOBI antibiotics is urgently needed, but their mother — a single mother of several children — cannot afford the medication. Yulia and Sasha’s treatment costs 525,720 rubles (approx. $17,852). They really need your help!
13 February 2012

An extract from their mother’s letter:

Our life changed dramatically when Yulia and Sasha were born. My girls have had lung problems from birth. It was one diagnosis after another. Every month they would end up in the hospital with new complications. The prescribed treatments didn’t have any effect. Day and night the girls would be almost suffocating from their coughing fits, and there wasn’t a single medication that could provide any relief from their condition. While we were together in hospital, the girls’ dad decided he couldn’t handle living this way and walked out on me, our son and our daughters. He left me desperate, alone with my children suffocating, having no idea what was going on or what to do. I don’t know how I managed it but I insisted on their being admitted to a Moscow hospital. That was where the girls were diagnosed with cystic fibrosis.

I cheered and cried at the same time. I no longer had that horrible feeling of the unknown, when I didn’t understand what was going on with my children and there was nothing I could do to help them. Cystic fibrosis can’t be cured. In order to live a normal life, my daughters will have to be constantly taking medication. Still, they could breathe and that was the most important thing at the time. It was then that I learned about the Pseudomonas aeruginosa infection, Yulia and Sasha’s worst enemy. That’s what was slowly killing them. When discharged from the hospital, they were prescribed two medications, Pulmozyme and TOBI. We received Pulmozyme back in our hometown for free, while TOBI was replaced with Gentamicin. Back then I didn’t attach too much significance to it, thinking that the doctors knew best. Our local doctors talked me out of going to Moscow for treatment, saying that it was the same everywhere, and anyway it was expensive to go to Moscow and I’d have to leave my son at home on his own. I did everything they said, but the girls’ condition started getting worse again. When I contacted the Russian Children’s Clinical Hospital where they’d been before, the doctor told us to come immediately and sent us hospital admission vouchers.

It turned out that the medication our doctor had so «thoughtfully» prescribed instead of the expensive TOBI wasn’t actually helping at all. Meanwhile, the Pseudomonas aeruginosa infection turned mucoid, resistant to any antibiotics, and the girls had so much mucus in their lungs that their bodies almost stopped functioning. We were prescribed TOBI again, and it was stressed that we couldn’t replace it with any other drug — nothing else would help Yulia and Sasha. The medication for both girls costs 525,720 roubles. We’re living on sickness benefits and have nothing to sell. I would give up anything to help my children but I have nothing worth that kind of money.

Medical science never stops moving, and pharmaceutical companies are always discovering new life-saving drugs. We believe that a cure for cystic fibrosis will be found. We’re living on the hope that we’ll live to see that day. Please help us!

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