17 March 2014
I am filled with fear when I remember that time: when we lived from seizure to seizure, always worrying how another hospitalization would end. That was a time of eternal stress and fear. Sonya’s state could get worse in any minute and we were struck with panic waiting for the ambulance and giving her all the medicines we had, because we did not know which of them, if any, would help in that particular case. Our elder daughter Katya still startles every time when she hears an ambulance alarm and rushes home when she sees an ambulance car going towards our house. That was a horrible time for our family. You changed our life when you helped to pay for the diagnostics in Tecknon clinic, in Spain. We will never forget it.
I am looking at our quiet and stable life now and I can’t believe! We have started to smile, we sleep at night, we go for a walk, go tobogganing. Instead of going to a kindergarten Sonya attends classes early learning centre. Last month she learnt to brush her teeth, to dress herself, to cut vegetables and bread, to cook porridge. Sonya enjoys these classes and doesn’t want to leave. But at home there are other interesting things waiting for her: toy blocks, pyramids, colorful cards. My daughter starts to live a real life.
It’s hard to find the right words to tell you how much the family’s life has changed thanks to you. Only one year ago old drugs were replaced with new ones, but Sony has become absolutely different. It’s frightful to think of what could have happened if that trip to undergo a treatment had never been done. But again and again the mind goes back to that thought when there is the last pill left in a pack and it’s impossible just to go out and buy the medicines in a nearby drugstore. They are not sold in Russia.
The drugs giving Sonya a normal life can be bought only abroad. When Sonya was leaving the clinic one year ago, the parents bought as many drugs as it was possible while they were in Spain. After that they looked for every possible opportunity to buy the medicines and get them delivered to Russia. It was very expensive, very complicated, but the baby’s life depends on it, and Sonya’s family was ready to everything they could to do that. Now it’s time to buy the drugs again but they do not have money for this. They need to collect EUR 4000 otherwise the disease will resume. Filled with hope they are asking you: please help not to lose what we have already managed to accomplish with your support and strenuous efforts.