Kamil and Kamil Toshnazarov's disease is very rare. It is associated with a metabolic disorder and has the formidable name of propionic acidemia. It was not easy for doctors to diagnose the disease because it is not common throughout the world. The Toshnazarovs' firstborn son died because of the same disease. Then a long-awaited daughter and another son were born. Unfortunately, none of the children managed to avoid this diagnosis.
The disease runs hard, the work of all organs and systems: heart, liver, kidneys, neurological disorders begin. The disease progresses rapidly in children. Kamil sees very badly, and his vision continues to deteriorate. And Kamila is almost unable to move around because of paresis, and she has a gastrostomy. To slow down this destructive process, it is very important to monitor the acid-base level of the blood. When the balance is disturbed, children develop a metabolic crisis. It is accompanied by a sharp deterioration in well-being, nausea, vomiting, dizziness, the child may even go into a coma. It is a life-threatening condition. Each such attack causes irreparable harm to the health of children. That is why doctors recommended that parents buy a special portable device to measure the acid-base status of the blood. Timely regular measurement of these indicators will help prevent attacks and the development of possible complications. The family could not buy the device themselves, it was very expensive. The only way out was for the parents to ask for help from a charitable foundation.
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