Parents' Letter (December 20, 2011)
I need help for my disabled child. First I would like to tell you about my only daughter.
Katya was born on February 21, 2008 with congenital heart disease. Unfortunately she was diagnosed only in June 2008. The diagnosis was unconsoling — anomalous origin of left coronary artery from pulmonary artery, mitral insufficiency, tricuspidal insufficiency, severe pulmonary hypertension, circulatory inefficiency.
Unfortunately, our troubles didn't end on that. Katya still has very complicated surgeries ahead since the mitral valve prothesis and the pacemaker will work only for a certain period of time. The state of tricuspidal valve is also not very good. The work of Katya's heart depends on pacemaker.
After having so many surgeries the girl needs to take lots of medications which make her susceptible to allergies. Katya weighs only 13,5 kg at 4 years old. After receiving mitral valve prothesis Katya takes a medication that prevents blood clotting and must have her blood clotting level monitored regularly. Every other week we have to go to the hospital to have Katya's blood drawn from her vein. The hospital is very far from the village we live in. The trip to and from the hospital usually takes us about three hours. We use public transportation. Katya's cardiac surgeon Yuri Chesnov, who several times literally saved her life, and other doctors recommended me to buy a portable device for monitoring INR. But I cannot afford it since I have to bring my daughter up alone — my husband left me and Katya in 2009. I can't work and had to quit my job to be able to take care of my disabled child. Katya is home-bound.
But enough of sad moments. Let me tell you about Katya's personality. She is lively and curious. Sometimes Katya is very impulsive, sometimes very calm. It depends. She is full of boundless love towards me, her grandmother, her Dad though he doesn't live with us anymore. In spite of the seriois health problems, she is developing well (no worse than her peers), she already knows many letters, can count till 15, even tries to count in English (learned from educational cartoons). Katya is fond of painting, colouring, making playdough crafts, play all kinds of games (especially with her granny). Katya loves when I read fairy-tales, stories and rhymes to her. She likes to help me around the house — tidy the house up, do the dishes. She adores taking care of our flower beds. Katya loves going to the circus, puppet show, taking strolls in our park. Despite all the problems, we try to make each day of our life interesting and bright. Though sometimes, when I think about Katya's future, I feel desperate.
I hope so much for your understanding. I hope you will help us to buy Coaguchek.
Thank you in advance.