Good News: Little Boy with rare Dravert Syndrome gets His Medicine after Retentions at the Border

May 8, 2020 4:00 PM

 

 

After Dnevni Avaz newspapers published a story on Thursday about the difficult situation in which a seven-year-old boy Tarik Rovcanin from Vogosca settlement in Sarajevo found himself, the medicine he needs are allowed to pass at the customs at the Sarajevo airport and arrived at his home address.

This information was confirmed by Zinaida Lier, the boy’s grandmother.

“Thanks to everyone who helped Tarik get his medicine. We were very upset because Tarik had medication for another five days,” Zinaida Lier said through tears.

Tarik suffers from Dravet syndrome, a rare disease that causes 15 to 30 attacks a day. The only salvation for Tarik is the drug “Diakomid”, which is not registered in BiH, and the family procures it through acquaintances, mostly from European Union countries, most often Germany. Monthly therapy costs 516 euros.

Dravet syndrome, previously known as severe myoclonic epilepsy of infancy (SMEI), is a catastrophic type of epilepsy with prolonged seizures that are often triggered by hot temperatures or fever. It is very difficult to treat with anticonvulsant medications. It often begins before 1 year of age.

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