Parents of children with phenylketonuria held a picket in Novosibirsk. They believe that in this way they will draw the attention of the authorities to their problem.
Parents of children suffering from phenylketonuria went to the picket. In this way, they hope to draw the attention of the authorities to their problems. Novosibirsk residents oppose the removal of disability from the age of 14 for adolescents, since this is why they are deprived of benefits. So, they ask to increase disability to 18 years.
- We are few, yes. But with proper support, with which our state can cope … - says one of the mothers.
In addition, parents are in favor of providing children with special food. This is due to the fact that patients with phenylketonuria need to follow a strict diet - low-protein or protein-free. Similar products, according to Novosibirsk residents, are very expensive.
- We have to go out here today to pay attention to us. So that they give us food, so that they provide us with medical nutrition without delay,”a picket participant OTR quotes.
Phenylketonuria is a rare hereditary disease associated with a violation of amino acid metabolism. Phenylalanine accumulates in the body and causes severe damage to the central nervous system.