Hrodna Family Intends To Seek Humanitarian Asylum Abroad

Officials cannot provide Belarusian children with the necessary medicines.

Every day two little Hrodna residents, suffering from a rare disease - Willebrand syndrome - may die. Vital medicine, according to the family, was purchased by the regional executive committee in miserable quantities, Belsat reports.

Will the medicine be enough to save children?

Even a cut or blow can cause the death of 12-year-old Maksim. The boy suffers from Willebrand syndrome: his blood has poor coagulability. The Austrian Vilate, who used to help him, now causes allergies. Only German Hfemate® P, recommended by the Center for Children's Oncology in Barauliany, can help.

Volha Makarevich, mother of a disabled child:

"This medicine is as strongly needed as insulin for a person with diabetes mellitus. We skate on thin ice every day. If there is no medicine, life may come to an end. My son is 12 years old. He is the only child. I don't want to lose him, I love him."

The cost of the injection is $500. Only the Health Department of the regional executive committee can order medicines. Hfemate® P was purchased in the amount of 1200 units of active substance - officials informed the family. 1200 units are one bottle, mother says. At least two units are needed in case of bleeding.

The child will get as much medicine as necessary, the regional health department explains. Alena Kurbat, Health Department of Grodno Regional Executive Committee:

"I won't clarify the amount. However, specialists made calculations and said that the drug was available at the moment. I don't know why she's saying there is only one bottle of it!"

So far, Maksim's bleeding has been stopped by medicines available," his mother complains. Specifically, the haemophilia remedies, unsuitable for Willebrand disease. Sometimes there were none.

"In June, my son lost his milk tooth. No medicine was available either in the hospital or on the hands or in the ambulance. The child was just discoloured to blue. I have pictures of his belly, arms and legs. We went to the children's hospital and they looked at him: "Oh, you are so blue! But we can't help you." And we were sent home, Volha Makarevich says.

Not only Volha Makarevich but also Tatstsiana Shahbazava demands to buy Hfemate® P and Vilate in the amount necessary for ambulance and hospitals. Tatstsiana has a 6-year-old son Aikhan suffering from Willebrand syndrome:

"The child goes to school and I'm afraid to let him go alone. Even the teachers themselves, I think, will be afraid to accept him with such a serious illness. The same thing happened in kindergarten. On the third day, they called me and said that they were afraid to take responsibility for a child with such a disease. God forbid someone will hit him, and what will we do? It may be late for an ambulance."

If there are few people with Willebrand disease in our country, there are at least 600 people with haemophilia. According to public activist Dzmitry Kamarou, the Baltic States and Russia buy in modern medicines, which let people live a normal life. In our country, haemophilia is treated with cheap medicine of the 80s. The result of such treatment is regular bleeding and severe pain.

Dzmitry Kamarou, Chairman of the Association of Hemophiliacs:

"If it is a joint, it will billow until the pressure in the joint is equal to the systolic pressure of human blood vessels. [...] It's wild pain, the tissue is stretching. Haemophilia pains are compared to nephrocolic."

Volha Makarevich complained to the Head of State's Administration about Hrodna Health Department. If officials do not buy enough medicines, the Makarevich family will seek humanitarian asylum abroad," the woman says.