Time is running out for Darina Sorokina. As the 2 year old gets older, an unlikely international coalition of more than one thousand artists, young mothers turned activists, and Bitcoin technologists race for ways to overcome the last hurdle to saving her life.
What remains needed is $400k for a one-time treatment and week-long hospital stay for monitoring.
More than a thousand artists have donated works of art to be sold as an NFT at an online Gallery opening over Zoom on Monday, October, 11 2021 at 8pm. The art will be combined into an NFT – a technology that creates a unique digital existence for physical items (in this case scans of the paintings) into something with value for being bought and sold as an investment or collector’s piece.
Russian toddler, Darina Sorokina, is suffering from a rare genetic disease called SMA (Spinal Muscular Atrophy) which progressively eats away at the ability to move, eat, and eventually breath. The victim progressively loses motor control before dying.
However, there is a miracle cure. Pharmaceutical giant Novartis has developed a genetic treatment that will correct the problem with a one time injection. Called Zolgensma, the one time infusion has achieved the Guinness Book of World Records as the most expensive medicine ever made at $2.1 million per dose.
In the West insurance would cover the genetic treatment, but Russia’s state-run healthcare did not. Artist activists led by two multi-talented young mothers, Zina Semenova and Dina Brodsky, managed to use Instagram to raise enough attention for Darina’s plight that the necessary $2.1 million was raised.
It was a fund-raising miracle. A miracle that, partially thanks to Darina, will not be needed in the future. All the attention surrounding Darina’s situation caused Putin’s government to change their policy and Russia will pay for the treatment for baby’s suffering from SMA moving forward.
But Darina herself will fall through the cracks. Russia will only treat babies under 1 years-old. Darina is too old. Her short life has helped save dozens of other Russian children, but because of her age, the Russian medical authorities have forbidden Darina to receive the treatment within Russia because the medicine is most effective for babies under 6-months-old.
If Darina is going to be given the life-saving treatment, it will need to be outside of Russia. Darina has no advocates aside from an unlikely mix of artists and tech enthusiasts.
The fledgling movement decided to draw upon Dina’s resources as an Instagram influencer. The online arts giant BoldBrush also joined the effort. Together they asked every artist they could – professional or amateur – to make a picture of a bird they would send in Sofia’s name to Novartis.
Now Darina is up against the clock not only because she is only eligible to receive Zolgensma injection in a few selected hospitals administering it up to 13.5 kilograms of weight, the money already donated to help her is in an escrow-type account and will be refunded to the donors if Darina is not given the treatment in the next two weeks.
“Birds for Sofia” is working on one more miracle in time to save Darina’s life. The 36 absolutely best of the paintings have been combined together in a mosaic NFT by Charged Particles using their unique NFT technology. The buyer will be able to unlock each individual painting as an ultra high-definition image file and also run all of them as a digital slide-show.
For more information, please visit birdsforsofia.org and www.charged.fi.
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