Mikhaela Mihailova is the mother of 4-year-old Raya, who has the rare disease cystic fibrosis. Michaela is a beautiful young woman, musician-violinist, works in the Sofia Opera. She manages to work and pay attention to her child, of course, not without the invaluable help of the grandparents who help raise Raya every day. She can't go to kindergarten, because that means constantly getting infected with new and new viruses and infections, which for her become complicated and develop into bacterial ones. And because of her illness, the little girl is on long-term antibiotic therapy for 2 months.
Raya and 3 other children with rare diseases are the inspirations for the upcoming run in South Park in the capital on February 28, on the occasion of Rare Disease Day, which will be celebrated for the 8th time in a row.
Here is the story of little Raya, told by her mother Michaela, who fights every day for her child's survival and treatment.
Mrs. Mihailova, when was cystic fibrosis diagnosed in your daughter Raya?
- Her illness was discovered last March. We went to hospitals, she had constant illnesses, almost since she was born. The doctors concluded that appropriate genetic tests should be done. They were positive and that's how her disease was proven. It rarely happens that two people with a gene mutation come together to get the rare disease cystic fibrosis, but here it is a fact.
The disease is characterized by quite profuse sweating, inability to digest food, because the pancreas does not work well, secretions collect in the pancreas, in the liver, in the lungs. These secretions in the lungs respectively lead to stagnation and the development of infections. Therefore, it is necessary to take an additional enzyme before each meal, with time the dose increases.
Raya is not one of the typical cystic fibrosis children, she also has asthma. That is why the disease was discovered in her later. The first suspicion of cystic fibrosis came when he was 8 months old. Then he got bronchiolitis. After that, he got sick every month, he had severe infections, he sweated, he lost weight, then gained it. This fooled the doctors into thinking that he only had childhood asthma, which was how it was documented. She was prescribed corticosteroids, Urbazone, etc. It wasn't until M. G., when he was 3 years old, that they noticed that something was wrong and did these genetic tests. She also has asthma because she gets severe shortness of breath, which is not typical for cystic fibrosis. The problem is that we could not react in time with the treatment. In Austria, for example, treatment begins already in the first months after the birth of the child.
Where are you being treated now?
- The disease was discovered in the Children's Clinic for Respiratory Diseases m.y. But we constantly go to a doctor who monitors the child, takes microbiology every month to monitor the presence of bacteria in the lungs, which actually causes the infections. Examining the secretions for the presence of bacteria is important because they destroy the lung.
Not rare
these patients end up with a lung transplant
after the tons of antibiotics they drink in their lifetime. The doses they take are also much larger than other people would take for a lung infection.
Raya often has to take an antibiotic, every 2 months or so. Our form of the disease is not as severe, depending on what bacteria enters the lung. The nightmare starts with going outside - I don't have to touch many things, I have to keep her away from stagnant water, away from fountains, where there is a possibility of inhaling bacteria that could cause an infection later on. It's also very distressing for the child because she wants to go to the playground, but I have to keep her away from contact with other kids because they might give her a virus. I limit her in this regard, she does not go to kindergarten. Not to mention the inhalations that are done 3 times a day, drainage that is done as a tap to remove the accumulated secretions in the lung.
How is the matter of the free medicine for Heaven's disease?
- It is difficult, because the medicines that are covered by the He alth Insurance Fund are provided free of charge only from the child's 5th year. For her, for example, the main medication, which is quite expensive, is given from the 5th year, and she
he was 3 when the disease was discovered
I am grateful to the Cystic Fibrosis Association, which donated a quantity of this inhaler solution with which the inhalations are made. We treat her thanks to donations from the association, we also have a special pump for inhalations. In Austria, they give the medicine in question from the 1st year of the child, I don't know why in our country it is after the 5th year.
We also have no clarity whether there is already a clinical pathway for the treatment of cystic fibrosis patients. There are no separate rooms in the hospitals specifically for these patients, and they must be protected from any infections, it is dangerous for them to be in a common room with other patients. Here, doctors do not have enough information about the treatment of these patients, they give small doses of antibiotics. We get our vitamins, they are special, they are made in the USA and they are not available here. Again, one of the parents has found a way to import the vitamins from the US, we order them from him, pay for them, and that's how we get them. All information is shared between parents, otherwise there is not enough clarity about the treatment of these patients. Again, from the association, I received a disc about what daily prophylaxis is, how to protect it from complications and the development of infections.
I am very worried about my child, it hurts. It is practically a severe disease that leads to an earlier death. I have a hard time accepting that perspective. We will fight, although I don't know exactly how that will happen. I pray that the care for these children will be as long and of high quality as possible. I would be happy to see care in Bulgaria regulated, to have a place where they can be treated. Life and treatment of a person with a rare disease are difficult in our country. I wish we could go to the doctor, get her prescribed a certain regimen of antibiotics and have it work for her, rather than me looking for information on the internet or through acquaintances. They don't know how to treat some bacteria here. My child, for example, is resistant to one of the most expensive antibiotics used in our country, and it will not work for him. I don't know how we're going to treat her. Medicine is advanced, the world is small, they should also know how to treat certain bacterial infections in our country.
