2 September 2011
In Tanya’s town very few people know what cystic fibrosis is. Even fewer people know what it does to a child. They think Tanya just doesn’t eat enough, or is lazy, that’s why she is so skinny and pale, that’s why she can’t run for even two minutes without coughing so much, that’s why she doesn’t attend the physical education classes and often skips school. Very few people know that the infection that is absolutely not dangerous for a healthy person, is actually killing Tanya. She isn’t taking vital medication to fight that infection simply because of the lack of money.
With age Tanya understands more and more of her disease. She wants to live. Now she knows that people with cystic fibrosis can live very differently: if they have medication, they live long and normal lives, if they don’t have medication their lives are short and difficult. She also knows that the antibiotic is supposed to be provided by the government, and in some places it actually is provided. She knows that some people in big cities get it for free. Probably the medicine gets all used up before it reaches her small town in Samarskaya oblast. There simply isn’t enough. Maybe they forgot about her?
Someone will say that Tanya’s parents must go and defend the rights of their child, they should fight for her life. Well, Tanya has only one parent — her mom. She can’t even work, because Tanya needs constant attention, she needs help in doing regular exercise, inhalations, taking pills and food at a very specific time. Tanya can start suffocating any minute, and her mom needs to be around for that as well. So they live on disability benefits only. Those people that Tanya’s mom needs to fight with for Tanya’s rights are very far away, and extremely hard to reach. And Tanya is right here with all her needs, so she takes all the attention and care. Tanya’s mom simply doesn’t have the time and effort needed to argue with bureaucrats who naively believe that the family with average monthly income of 4,258 rubles (143 dollars) can purchase medicine for 95,580 rubles (3,222 dollars).
Two years ago Tanya’s mom got tired of waiting for government’s support and asked us for help. Back then you had helped collect the money for one course of Colistin. It treated the infection completely. However now it’s back. We don’t know if Tanya will survive until her case is finally considered by the government. Her condition gets worse and worse. Your help is needed again!