There is less and less time for Gavrilo Djurdjevic, an eight-month-old baby who suffers from a rare and severe disease, spinal muscular atrophy type 1, and who should receive the most expensive medicine in the world – Zolgensma – as soon as possible. However, now there is a chance that Gasa will receive therapy at the beginning of July.
As his mother Nevena Djurdjevic has told Telegraf.rs, a hospital in Hungary addressed them with a statement that there is a free term – May 25, when little Gasa could go to them for treatment. However, the road to Zolgensma is a long one for this boy with beautiful chestnut eyes – he needs to collect 800,000 euros in a very short time.
She stressed that they want to believe that this amount of money can still be collected by the end of May, because, as the boy’s mother says, each day is important for Gasa.
“If he traveled at the end of May, all the tests would have to be done there first, to determine that his condition is good enough to be able to receive the Zolgensma therapy,” said Nevena.
According to her, all that would certainly last a week to a week and a half, so the toddler would receive Zolgensma in early June.
Another 800,000 euros are needed for the therapy to be bought, but his parents are optimistic.
“If we don’t collect money by the end of May, the next date for receiving therapy will be the end of July, maybe August. And doctors insist that the medicine should be received as soon as possible,” says Nevena.
As she added, it bothers her the most when people ask when the deadline is.
“The deadline has long passed because Zolgensma must be administered as soon as possible to children suffering from spinal muscular atrophy. Every day is important there. Every motor neuron that dies, Zolgensma does not revive, but it will save each that is alive, that is what the doctors explained to us,” our interlocutor points out.
Nevena stressed that Gasa’s muscles, which are working, that is, which have been preserved but do not have the strength, will be strengthened because proteins will reach them and feed them.
“Zolgensma will perform the function of a gene that he does not have,” our interlocutor explains.
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Video: Little Gavrilo: My dad knows how weak my arms are, how my legs dont move
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