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Ukrainian woman legalized medicament for rare diseases treatment after the death of her son

Oksana Dron and her son KirillOksana Dron gave hope to live 19 Ukrainian children.

34 -year-old Oksana Dron’, inhabitant of Nikopol, who had buried her 9 -year-old son – Cyril diagnosed with Hunter disease (slow dyeing), did the really unthinkable deal: she gave hope to live 19 Ukrainian with the same disease.

Due to incredible efforts of our fellow-townswoman, some days ago, expensive medicament "Elapraza" was legalized in Ukraine. This medicament is the only salvation for sick children.

"Nobody believed this medicament would be legalized, but me and Cyril did. But Cyril has not lived till this time”,- Oksana tells with fighting back her tears. She confesses, she started knocking on every door 5 years ago, when her son was diagnosed with this disease.

"He died in front of me, the only hope was this medicament, but it was not legalized in Ukraine. Every day I wrote letters to all instances with request to legalize this medicament; sought families with this distress to fight for lives of our children together. I am very grateful to caring people who transferred money to our account. We needed money so much, especially when Kyril had been being in resuscitation department. I'll never forget my son nearly died, woman whose child was bedridden, transferred 2000 UAH to the card. She said she really understood my feelings, because she almost lost her son when he had gotten into an accident" - says Oksana.

3 thousand EUR per bottle

Now the woman back to one of Nikopol plants. Oksana saturate herself in working, she is crane operator and charity foundation “Nikopol Kids” volunteer.

She admitted to “Vesti”, that she is not ready to have another child.

"I help to raise funds for all children in need. I hope that they will recover. All parents, whose children have Hunter disease and who need help, can contact me in the social nets. I shall not stop until every child with this disease will not be given this medicament. It is very expensive - one bottle (it lasts a week, but child can be completely cured after the long course) costs more than three thousand EUR. These children must live, because my son was waiting for this medication and believed that it would save him from death," - she said.

Today in Ukraine 19 children suffer from this rare disease. As we were told in the Dnipropetrovsk region Public Health Care Department, Kyril had been the only one child in our region with Hunter disease.

Medicament will be brought in early 2014.

Ministry of Public Health Care promised to tell at the beginning of next week about terms of "Elapraza" supplying for persons with Hunter disease, and how much money it would cost for the state budget.

As it was explained by our source in the Department, in January, this, medicament would be supplied to Ukraine. However, the medicament would not be given to sick children at once.

"Firstly, children will have special tests on individual compatibility with the medicament, because it can be side-effects," - said the source.

Olga Bondarchuk

Photo: O. Dron’s personal archive

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