9 September 2010
2 years ago Nastya’s dream was to get a motorized wheelchair so that she could move around by herself. Her old wheelchair would not let her do that. It used to be just a dream, and then you helped to make it come true. Now Nastya has a new dream that is more like a necessity. Her illness is progressing and distorting the internal organs. Nastya cannot take a deep breath, sit straight or eat normally. Pain is caused by every move.
The leading doctors could only suggest strong painkillers. They also suggested to consult with the Finnish clinic Orton, where doctors have been surgically treating Werdnig-Hoffman disease and have had success. Treated patients can live without pain. One surgery costs 42,000 euros (54,000 dollars). This is too much money, but with your help Nastya’s dream may come true.
I have never walked in my life. Because of my disease my muscles atrophy. I am 21 years old and I have accepted my condition and learned to live with it. I just don’t want it to get worse. I have never thought about any improvements, since childhood I was being told that wasn’t going to happen.
Now I feel that it’s getting worse, I am getting weaker. I cannot sit for a long time, my back starts hurting. Everything inside me is misplaced and also hurts. It even hurts me to eat, it’s getting harder to breathe. I try not to think about my future. I cannot even enjoy my job that I used to love.
Day and night I think about the surgery that could save me. I really want to breathe freely again, I want to get relief from this gnawing pain, even if it’s just for a little bit. It is hard to realize that the solution is out there, but it is not possible for me because of lack of money. We live together with my mom. Everything we make usually gets spent on current needs. I ask you to hear me and help me, as my life is getting unbearable!