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Nation-wide charity effort sees toddler patient flying to LA for treatment

Ljubljana, 6 November - The boy at the centre of a nation-wide charity campaign that raised nearly EUR 4 million in only about a week in September, left for Los Angeles on Wednesday to receive a potentially life-saving treatment. 21-month old Kris, who suffers from spinal muscular atrophy, will receive a drug not covered by the national health insurance.

Brnik
The family of 21-month-old Kris, suffering from spinal muscular atrophy, bids farewell before leaving to the US after raising more than enough money for an expensive treatment in a massive fund raising campaign.
Photo: Bor Slana/STA

Brnik
The family of 21-month-old Kris, suffering from spinal muscular atrophy, bids farewell before leaving to the US after raising more than enough money for an expensive treatment in a massive fund raising campaign.
Photo: Bor Slana/STA

Brnik
The family of 21-month-old Kris, suffering from spinal muscular atrophy, bids farewell before leaving to the US after raising more than enough money for an expensive treatment in a massive fund raising campaign.
Photo: Bor Slana/STA

Brnik
The family of 21-month-old Kris, suffering from spinal muscular atrophy, bids farewell before leaving to the US after raising more than enough money for an expensive treatment in a massive fund raising campaign.
Photo: Bor Slana/STA

Brnik
The family of 21-month-old Kris, suffering from spinal muscular atrophy, bids farewell before leaving to the US after raising more than enough money for an expensive treatment in a massive fund raising campaign.
Photo: Bor Slana/STA

Brnik
The family of 21-month-old Kris, suffering from spinal muscular atrophy, bids farewell before leaving to the US after raising more than enough money for an expensive treatment in a massive fund raising campaign.
Photo: Bor Slana/STA

Brnik
The family of 21-month-old Kris, suffering from spinal muscular atrophy, bids farewell before leaving to the US after raising more than enough money for an expensive treatment in a massive fund raising campaign.
Photo: Bor Slana/STA

Brnik
The family of 21-month-old Kris, suffering from spinal muscular atrophy, bids farewell before leaving to the US after raising more than enough money for an expensive treatment in a massive fund raising campaign.
Photo: Bor Slana/STA

Brnik
The family of 21-month-old Kris, suffering from spinal muscular atrophy, bids farewell before leaving to the US after raising more than enough money for an expensive treatment in a massive fund raising campaign.
Photo: Bor Slana/STA

Zolgensma, a promising treatment, is not covered by the Slovenian national health insurance provider because it has not yet been registered in the EU. While promising, the Zolgensma treatment is also very expensive, at EUR 2.23 million.

Effects of the drug will expectedly be seen very soon. "But it's hard to say what will happen, there are no rules," Kris's mother Ana Jerak told the press just before the family boarded a plane for Los Angeles today. The family plans to stay in the US for two to four months.

It is the first gene therapy for spinal muscular atrophy approved by the US Food and Drug Administration. The cutting edge therapy also involves technology developed by the Slovenian company Bia Separations.

Kris and his parents, accompanied by a doctor, took off from Ljubljana airport in a private jet and will touch down in Los Angeles in about 14 hours. The boy, who often suffers great pain, will be lying down during the flight and will spend the time watching cartoons, so as not to get too bored.

The flight was paid for by Miodrag Kostić, a Serbian businessman who has been expanding his business portfolio in Slovenia in recent years. "For us, the help from Mr Kostić is a great relief," Jerak said, adding that the cost of the flight is about EUR 400,000. "We will be eternally grateful. Helping a child one does not even know is a great gesture."

Departure to the US comes just over a month after the donation campaign that exceeded everybody's expectations and the charity in charge, Palčica Pomagalčica, faced a massive tax bill, because it is yet to acquire a humanitarian organisation status, which allows a tax exemption.

The issue was resolved with the help of Friends of the Youth Association (ZPMS), which took over the EUR 2.3 million needed for Kris's treatment. The funds have meanwhile been forwarded to Kris's hospital in Los Angeles and the treatment is all paid for.

The rest of the funds collected remain with Palčica Pomagalčica and will be used for other sick children in need of financial help for treatment. The organisation also intends to apply to become a humanitarian organisation, which it can do a year after establishment at the earliest.

mas/eho
© STA, 2019