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Smirnova Dasha, 13 years old

Date of birth: NaN  ber .
Nizhny Novgorod.

Diagnosis: cystic fibrosis. When Dasha was taking Toby, she could temporarily lead a normal life. A life without pain or constant cough. A life where she could play outside with other children without fear of deadly infection. Now Dasha needs that medication again. One course of Toby costs 264,000 rubles (8700 dollars). The city government said they didn’t have money for helping Dasha’s family to buy it. Dasha’s parents also cannot afford the medicine.
29 September 2010

Dasha’s mom wrote:

Our family is very united. We are 5: mom, dad and three beautiful daughters. The only cloud on our happiness is our eldest daughter’s disease. She has a severe form of cystic fibrosis. We’ve been in and out of a lot of hospitals, we’ve been through a lot of pain. The hardest part was always trying to get the vital medication. Often we’d buy it ourselves. Other times we didn’t have enough money, and couldn’t get anything for free, even though the government promised. Then Dasha would live without any medication. It gave more and more complications and new relapses of the disease.

When Dasha was 7 years old, she had a bronchoscopy done. It was the hardest time for all of us. The doctors didn’t give us any hope, and we too started to lose it. In spite of all that, our little girl has such an incredible rage to live! She greets sun, snow, flowers, rain and every new day with so much happiness as no healthy person ever experienced. It was probably thanks to that rage that our daughter is still alive. We all live! Although the way we live isn’t very pleasant. Dasha constantly has to take medicine, she starts coughing and is short of breath every time she goes out, she almost never talks to children of her age. She has grown and she understands a lot now. She wants to be like everybody else, like her sisters. We take good care of her, as much as we possibly can. Her younger sisters didn’t even go to daycare to exclude the possibility of bringing a virus home.

During our previous stay at the hospital the doctors gave Dasha the new antibiotic Toby. For the first time in many many years our little girl could sleep without coughing, could go outside and even run around with her sisters. Dasha’s dream is to go to school, but we cannot make it come true. We don’t receive Toby anymore, even though one is supposed to take it for 6 months, and Dasha’s course only lasted 20 days. Unfortunately, we don’t have a chance to buy the medicine. Our dad is the only one who works and he makes 10,000 rubles (330 dollars) and I stay at home. Dasha gets 6,000 rubles of disability pension. Six months course of Toby costs almost 300,000 rubles. Nevertheless, I want to make my daughter’s dream come true, so I ask for your help.

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