12 March 2012
Ksusha was diagnosed with cystic fibrosis when she was six, and Sasha has suffered with
this disease since birth. For eight years, the children have been medicated with tablets, IVs, injections, and inhalations. Last summer, an anonymous donor helped buy medication for these children by donating 100,000 rubles. But today, they need more help. In February, the children were hospitalized in the Russian Children?s Clinical Hospital, Moscow, where doctors detected Pseudomonas infection in their lungs. This infection is extremely dangerous to cystic fibrosis patients because it can destroy their lungs within just a few months. We are launching an urgent fundraising campaign to purchase Colistin, an antibiotic that can fight Pseudomonas infection. This treatment costs 290,000 rubles.
An extract from their mother?s letter:
Sasha is smart and very active. He likes sports very much, but even cycling is difficult for him. Therefore, Sasha spends a lot of time in front of the computer since it doesn?t make him suffer. Like any child, he longs to run, jump, swim and going out with other children. Sasha hopes that a treatment for his disease will be found soon, and then all his dreams will come true.
Ksyusha has come through many difficulties in her life: stressful years in hospitals waiting for the right diagnosis, incorrect diagnoses and improper treatment. Now, Ksyusha goes to school, though often misses her classes. She is already a grown-up, and it is difficult for her to live with her disease. When I come home from the drug-store without any medicine because they cannot give away the prescribed medicine for free, and I have no money to buy them; when she suffers from not having enough air in her lungs; when she finds out from social networks that one of her friends with cystic fibrosis is in intensive care or has passed away ? during these moments it is very difficult to control emotions and not to give up. But she is the older sister, Sasha follows her example. So, she pulls herself together and continues to fight for life, not for herself, but for him!
I can?t hold back tears looking at their friendship, their love, and mutual support. I am a lucky mom!