She has a deadly disease: only a 2 million syringe can save Karine


Hamburg – A syringe could save Karine (11 months). But the infusion, for which her parents left their homeland Armenia and which would finally bring normalcy back to the family’s life, costs almost 2 million euros.

Karine suffers from “spinal muscular atrophy” (SMA type 1) – a genetic disease in which a certain protein is not produced in the body. This leads to muscle weakness and symptoms of paralysis.

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If left untreated, SMA leads to death in most cases within the first three years of life.



Karine suffers from the mostly fatal disease “spinal muscular atrophy”Photo: Andreas Costanzo

Papa Karen Hayrapetyan (35, IT specialist): “When Karine was five months old, we received the diagnosis. In Armenia she would have had no chance of therapy, so doctors advised us to go to Germany to save her life. “

Tragic: Before Karine, her mother lost a child – in the seventh month.

Karine is treated in the children’s UKE. As early as August, the doctors submitted an application to the health insurance company to cover the costs for treatment with “Zolgensma” – in order to prevent “… further rapid progression” of their disease.


Hoping for the longed-for injection: Ofelya and Karen with their daughter

Hoping for the longed-for injection: Ofelya and Karen with their daughterPhoto: Andreas Costanzo

But instead of the syringe costing almost 2 million euros, the supposedly cheaper drug “Risdiplam” was approved, which Karine now has to take every day and for life instead of a single dose.

Costs per year: around 300,000 euros. Father Karen fights for his daughter and for the syringe that can save him.

He is supported by lawyer Johannes Kaiser from Olpe (North Rhine-Westphalia), who has already looked after over 40 SMA cases in Germany: “It seems that the rejection is not based on the health insurance company, but the Migration Office. We have now submitted an urgent application to the court. If that goes through, Karine could get the longed-for injection this year. “

The health insurance company did not respond to BILD’s request until Friday.

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