Kris Zudich, the 20-month-old boy with spinal muscular atrophy who brought Slovenia together in a charity campaign last month, departed to the United States today. At about noon, a private jet took off from Brnik Airport, the trip also being paid for from the donations raised for the treatment, considered the most expensive single drug in the history of pharmaceuticals.
In early October Palčica Pomagalčica Society posted its fundraising invitation on Facebook, eventually raising almost €4 million in three weeks, well over the desired sum of €2.3 million. The Society announced that the excess money would be distributed among other children facing similar problems.
Since Palčica Pomagalčica Society had not yet been being granted the status of a humanitarian organisation, it saved the funds from heavy taxation by entrusting them to the Slovenian Association of Friends of Youth.
Meanwhile, Novartis announced that the use of the medicine Kris needs has been temporarily stopped in children aged between two and five. This however will not affect Kris, who will thanks to the successful crowdfunding action receive the medicine (Zolgensma) before the age of two.
The family left for Los Angeles, where the clinic that will take Kris is located, and will stay there for two months, when Kris will be under constant medical supervision. The purpose of the treatment is to stop the development of the disease.
