Slovenian humanitarian action over the national borders

Slovenians have proven that they are able to get and stick together during the rough times. A heartbreaking story of little Kris brought the whole country together, showing that they most certainly do know how to follow the musketeer principle – all for one and one for all.

In the end of September 2019 all of the Slovenian media started reporting about the 19 months old boy from Koper – Kris Zudich, who is suffering from the worst form (type 1) of spinal muscular atrophy. This is a rare genetic disease where the body does not produce the protein it needs and consequently muscles start to die out. Because of that Kris is not able to sit or walk by himself. For him breathing is extremely hard, he only eats minced food and is not able to cry. When he is sad, a few tears slip down his cheeks. Kris’s grandmother was the one who shared the story with the public.

Kris was diagnosed with this disease when he was three weeks old, because he was moving less and less each day. At the time, he was given 8 months to one year to live without the medicaments. Three days before the diagnosis a medicine Spinraza was registered in Slovenia. Kris now gets a shot of it every 4 months. The medicine is injected directly into the spinal canal, but it only slows the disease down, it does not cure it. He has been getting this medicine since he was 2 months old and would have to be getting it for the rest of his life. At the end of May, a medicine named Zolgensma that completely cures the disease was registered in the United states. They insert hereditary record into the patient’s body and with that completely stop the progress of the disease. For the EU region, this medicine will be registered in the beginning of 2020, which for Kris is too late, because he will already reach an age of two.

Kris’s doctor, neurologist Damjan Osredkar informed the parents of little Kris of the medicine, for which Kris is the only suitable candidate in Slovenia. This medicine is proven to have already cured 36 young patients with the same disease as Kris. But there was a not so small problem – for the medicine he would have to go from Slovenia to Los Angeles to get it. An even bigger problem was the price for the Zolgensma which stands at 2.3 million euros (2.5 mio USD). Up until now this is the most expensive one dose medicine ever known. The price is so extremely high because in the US there does not exist any regulation that concerns prices for the medicaments – the seller sets the price as high as he wants. Insurance does not cover expenses of the treatment for Kris because Zolgensma is not yet included in the European register.

Kris at the start of the ‘media boom’ only had 5 months left to get the medicine, because the patient must receive it before the age of two for medicine to work. His parents asked Slovenians to help them collect money so Kris could get the treatment. They connected with small organization called Palčica pomagalčica that helps kids such as Kris. It was founded by two professors from the Koper primary school – Larisa Štoka and Katarina Podgajski. Through the media reporting they organized action, named it ‘Go help Kris’ and asked people to donate 1 euro for Kris to get the treatment he needs. People were asked to donate to Palčica pomagalčica’s bank account. ‘’For someone 1 euro does not mean much, but for us it means a lot. It means Kris is with us, it means Kris’s life, in short it means everything,’’ said Kris’s mom – Ana Jerak. The response from people was enormous and because of that they also opened SMS lines with key word KRIS5 for people to donate. In the first day 310.000 euros were collected, after the second day more than 700.00 euros, after the third day more than 1.5 million euros and after 6 days or more specifically in 150 hours the goal was not only reached but exceeded – people collected 3.719.000 euros.

‘’If 3 days ago, someone told me this would happen, I would have said he is crazy,’’ said the mom. ‘’I think something like that has never before happened in Slovenia. I could never imagine a kid like Kris would touch people’s hearts like he did. This action exceeded every expectation. Unbelievable!’’

Not just ‘ordinary’ individuals, the people donating were also companies, organizations, comedians, influencers, sports players, sports enthusiasts, caterers, policemen, firemen, hairstylists, famous individuals such as Luka Dončić, motocross rider Tim Gajser, football player Klemen Prepelič and also one and only Valentino Rossi. Some of them donated money meanwhile some donated their sports equipment, t-shirts, scarfs and backpacks, mostly signed by them. Many people donated things that have an enormous meaning for them – signed memory shirt from 2017 World handball championship where Slovenians won the bronze medal, signed scarf from 2017 European championship in basketball where Slovenians were golden, hockey stick, signed by Anže Kopitar and among all those objects there was also a Valentino Rossi cap with his signature. Petar Ostojić, a man who got the cap at one of the races when he met Rossi, decided to give it to auction and donate the collected money for Kris’s treatment.

‘’A sad story of a kid from my city who could live a normal life such as any other toddler but the disease in stopping him from it. I would not forgive myself if I had not helped as much as I possibly could. Because I financially cannot do as much as I would like to, I came up with the idea to give my cap away for Kris. It means much more for me to be able to help somebody with it than to keep it at home. As long as I am healthy I can buy another one and also get the signature again,’’ told Petar.

Not only the mentioned people, interesting fact is that the ones donating were also prisoners from Dob. Together they collected somewhere around 900 to 1.000 euros for Kris.  The man who started raising money in prison said: ‘’We too are human beings, we also have kids. I have 3 of my own. People should know that even though we are in prison, that does not mean we are all bad, villainous and biggest criminals.’’

Not just that, a show Znan obraz ima svoj glas (Your face sounds familiar) which usually uses votes from audience to determine who the winner of the episode is, decided to make a change. Instead of voting for contestants they closed the phone lines and encouraged voters to send a text message with key word KRIS5 to 1919 and help him get to his treatment.

3.719.000 euros were donated to the mentioned Palčica pomagalčica’s account. They decided to collect it via this organization so that the family would not be financially burden later on. The problem appears because the organization exists less than a year and because of that cannot be registered as a humanitarian organization. Consequently, the donated money would have to be taxed, meaning 1.9 million euros would have to go to the state budget. People were horrified because they donated their money and things for Kris’s treatment and more than half of it could have gone away as if it never existed. The unpleasant situation got a perfect solution. The donated money was transferred to the account of the Zveza prijateljev mladine Slovenije (The Friends of Youth Association) which is registered as a humanitarian organization and because of that the money would not be taxed. They signed the donor contract and transferred 2.3 million euros to ZPMS, the donated money will be used for Kris’s treatment, his way and accommodation in Los Angeles, what will be left will be dedicated for kids such as Kris. Larisa, the president of the Palčica pomagalčica named them ‘Kris’s friends’. Every transaction made with the donated money is and will be available at Palčica pomagalčica’s facebook site.

At the 6th of November Kris, his parents and the medical team landed in Los Angeles with a private plane, funded by a Serbian businessman Miodrag Kostić who heard about the story and was as well as the others touched by it. At the 8th of November, he was supposed to be examined by the doctor but his examination was delayed to the 12th of the same month because the doctor was too busy at the time. Kris was examined and it was determined that he will receive the medication by the end of November. Medication is prepared specially for each of the patients and must be injected within 48 hours since the preparation. After the procedure, he is going to be under strict medical supervision for another 3 months.

‘’Not in the wildest dream I could have imagined something like this is possible to happen,’’ said the president of Palčica Pomagalčica, Larisa Štoka who received an award named Zlato jabolko navdiha (Golden apple of inspiration) from the president of Slovenia for everything she has done for ‘Go help Kris’ action and Kris’s friends.

‘’Without you this would never be possible to happen. We thank each and every one of you from the bottom of our hearts to have donated and I hope Kris will someday be able to thank you himself,’’ said Kris’s mom.

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