A child is born. Everything seems perfect. That's what it is. Valeria is born naturally after a normal pregnancy. The little one drinks cheerfully to mummy's breast, the proud grandparents, uncles and aunts are overjoyed to visit the hospital, while at home the children's room awaits Valeria with a lot of love.
The family happiness of Alexandra and Mario Schenkel from Horw does not last long. On the fourth day of life, Valeria stops breathing and countless seizures follow. Epilepsy medications (antiepileptics) don't help. Valeria is shaken every day by cramps. Nobody knows what Valeria is missing. Until a genetic test brings the devastating diagnosis: KCNT1. A few letters and a number - a very rare gene mutation. The doctors inform that Valeria will never laugh, talk or walk. That she will only live for a few years and that there is no standard therapy. The gene mutation causes Valeria to suffer several painful epileptic seizures every day. A constant fireworks display in the head because the cells do not communicate properly with each other. It is desperate! It seems hopeless.
The gene mutation KCNT1 was first discovered in 2014, about 100 cases are known worldwide. The pharmaceutical industry is not interested in this, there is no money to be made with it. The gene mutation is too rare. The health insurance company and the IV wave off. One does not finance the development costs of a drug.
Valeria's parents do what everyone would do for their child - do everything in their power to find a solution. Time is running out! Daddy Mario desperately searches day and night for a person who can save Valeria. With a lot of luck he gets to Prof. Dr. Len Kaczmarek from Yale University (USA) and a team of neurogenetics who have proven that a mutated gene can be corrected. They developed a patch that is stuck to the gene and covers up the false information. But not all genes are the same. A particle (oligonucleotide) has to be developed for each gene, including that of Valeria. Neurogenetics in the USA are ready for this, Valeria can be cured. The drug can probably be administered to Valeria before the end of this year, provided that the financing is secured.
The development of this unique drug is costly and time-consuming:
1.8 million Swiss francs. An amount that no young family can simply afford. Personal savings and generous donations from relatives, friends, acquaintances and strangers have so far contributed half of this sum.
The aim of the crowdfunding campaign "save Valeria" is to collect the remaining 900,000 Swiss francs. A huge sum. But not impossible. When a lot of dear people help out. For Valeria. For one life. We need YOU and all your friends.
Together we can do it! Do YOU also help?