Editorial
We present you two brave boys: Lewis Hamilton, five - time Formula 1 world champion and Kris Zudich, who bravely fights a serious illness. We believe that fans of the queen of motorsport and all those who are holding their fists for the fastest Englishman in the silver arrow will join the auction and that we will raise additional funds to give Kris something that seems so self-evident to us. Life!
Nineteen months old Chris Zudich from Koper, who was born with a neuromuscular disease, is fighting a fight for his life. It has a so-called defect the SMN1 gene, which forms proteins to protect motor neurons. The latter translate signals from the spinal cord to the muscles, but if these proteins are deficient, the neurons die.
This is outwardly manifested by the child has difficulty moving, feeding, later begins to have difficulty breathing, lastly, he needs the help of a device to breathe or dies due to weakness. He was diagnosed with the rare genetic disease SMA, type 1, muscle atrophy of the worst form, when he was nine weeks old. The forecast of the specialists was horrible, namely that he has 8, at most 12 months of life ahead of him.
For a 30-year-old mother Yes, Jerak from Koper and her partner, the boy’s 26-year-old father Matteo Zudicha from the province of Trieste, time stood still. "He was born at 41 weeks, 60 centimeters tall and weighing 4245 grams, a beautiful dark-haired, dark-eyed, 'healthy' baby," Ana explains to us. Developmental delays were noticed very early on, as he had difficulty moving at three weeks and lay motionless at five.
You can also donate to Kris via SMS to 1919 by entering the password Kris (number). With the Kris5 password, you help your toddler with 5 euros.
Because of all this, Kris needs gene therapy right away, namely drug zolgensma, which treats such patients in the United States. This is a single dose of the medicine the condition is that the child receives it by the second year of age. So there is very little time left, as Kris will be two years old on January 28th. The Health Insurance Institute of the Republic of Slovenia does not cover treatment, as this medicine, which can completely stop the disease, is not (yet) in the European register of medicines.
All in all, of course, it stops at money, as one dose of the most expensive drug in history, which is supposed to not only cure but cure spinal muscular atrophy, costs, as reported by Americans, $ 2,5 million ($ 2,267.000). (Source: Slovenskenovice.si)
Total proceeds from auctions on the VMax.si website will be transferred directly to the organization's bank account at the end of the auction by the buyer Thumb helper, with which we also cooperate in the coordination of the auction itself.
