Two-year-old Arthur suffers from a rare disease that has 27 children in the world. He is the only one with us<

Two-year-old Arthur suffers from a rare disease that has 27 children in the world. He is the only one with us

Mrs. Renata's pregnancy and childbirth went well, so for a long time no one wanted to believe that Arthur could be ill. After two days in the maternity ward, however, the mother began to notice that there was something wrong with the baby because she refused to breastfeed. The doctors saw only bad breastfeeding techniques and convinced the mother that the boy was healthy and that she was just scared unnecessarily.

Her mother met with distrust even after two and a half months, when she was already 100% convinced that there was really something wrong with Arthur. She therefore asked the pediatrician for another examination at the hospital. She wrote her a request to the hospital, but with great contempt.

"At that time, we spent ten days in the hospital in Příbram, during which Arthur took on a fifteen blanket. The doctors found nothing in him but enlarged liver tests and slightly enlarged liver, but they didn't give any importance to any of that, they continued to consider Arthur a healthy child. "

"They received the answer only at a specialized facility, where an acquaintance arranged an appointment with a doctor. There, the doctor immediately recognized that something was wrong with Arthur and that he needed to be hospitalized, "Mrs. Renata told the News.

Forecasts? Bad and uncertain

The final diagnosis turned the whole family's life upside down. The prognosis is by no means good, and the situation is complicated by the very small amount of information about the disease itself, which only 27 children in the world suffer from. So no one knows what little Arthur's life will look like in the future.

"She can be here with us, she can be here with us for ten years. Especially let him be among us, he is happy and has no pain, "my mother wishes.

Mitochondrial disease is caused by damage to the EARS2 gene, which is responsible for processing proteins in the body, which causes a number of disabilities. In addition to being mentally at the level of a four-month-old child, two-year-old Arthurek also suffers from epilepsy and hypotension, ie reduced muscle tension, which is manifested, among other things, in the inability to eat orally. He started raising his head only recently.

Eighteen hours a day must be on full parenteral nutrition, ie nutrition that is administered through an established central venous catheter directly into the bloodstream, ie outside the digestive tract. He then has a feeding tube inserted directly into the small intestine to administer the drugs.

Arthur will probably never walk, sit or talk, he also requires literally twenty-four-hour care, which is very time-consuming, physically and mentally demanding.

"She must not be alone in the crib, not even for ten minutes. He could strangle himself on the tube, because now he can turn around. He vomits, so he can suffocate at any time, "says the mother.

Her family, especially her boyfriend and his older daughter, help her take care of the boy. The family is also joined by a nurse who helps her mother disconnect the central catheter.

"It also helps that we don't have to think every month about what to buy and what not to buy. The Good Angels help us and we appreciate it a lot, the whole family, "adds the mother.

More information on how to support the Arthur family can be found on the Good Angel website.