Vanya Balabonin, 10, a radiant and charming boy, has a rare disease that has no name yet. He can't digest normal food, and eats once a night, through intravenous infusion. A daily package of parenteral food costs about $28, monthly - $840. He needs that food to grow, gain some weight, play and just be - just like other kids. He is a very curious guy, eager to learn and discover the world. We make sure he gets this nutrition mix on time and on regular basis.
Many rare and incurable diseases are poorly studied today and have a variety of health complications requiring special care. Only through intravenous feeding can Vanya take necessary nutrients such as glucose, amino acids, lipids, vitamins, and dietary minerals. This is called parenteral nutrition. Vanya will depend on aided feeding all his life - to grow - till sciency has anything else to offer.
Thousands of kids, in more or less serious life-time conditions, may depend on special feeding till science has something different to offer. This type of feeding is costly for an average Russian family, on-going dependenc may appear an unbearable burden; while state provision is irregular, hard to obtain, and often absent. We at the RCPCF step in when a family fails to obtain special feeding for the child, advise on availablity, and purchase it for them.
RCPCF is based in Moscow, Russia, and supports 107 families with kids living with life-shortening diseases. 15 families whom we provide with special nutrition is a drop in the bucket because there are about 5 thousand kids only in Moscow with palliative needs - the real number of kids needing enteral or parenteral feeding is not known because there is no registry of them in official use. We look forward to grow the numbers we serve while this project is dedicated to Vanya only.
This project has provided additional documentation in a DOCX file (projdoc.docx).