Support Vakaris Fight Against UBA5 Gene Mutation

Greetings, here is my dear nephew Vakaris. This tiny miracle was born in Klaipeda, Lithuania, in the Pozera family. Mom, mother, daughter, and son – a delightful family idyll. However, since Vakaris' birth, we have recognised that he is unique. Vakaris visited a variety of specialists, including a paediatrician, gastrointestinal, cardiologist, neurologist, nutritionist, and cognitive specialist. Eating disorder, weight loss, extreme discomfort, and sleepless nights have become part of Vakaris daily routine. Nobody knew what was wrong with Vakaris, and he continued to deteriorate, revealing new symptoms such as infantile spasms and dystonia. Finally, after 7 months, the results of the genetic test came. Nobody expected this diagnose. An ultra-rare mutation of the UBA5 gene, which is present in 40 children globally. Although it is an extremely serious and incurable condition, we refuse to give up because symptomatic treatment is available. Vakaris is now being fed through a gastrostomy (a tube placed into his stomach). This helped him gain weight, the right medications relieved the agony caused by dystonia and reduced infantile spasms. We see his smile and hear his laughter more frequently. Although the body does not respond, the little guy attempts to communicate in other ways. Our future plans include travelling to Kaunas to begin a ketogenic diet, followed by a trip to London to treat his dystonia at the Dementech neuroscience clinical academic centre. Vakaris has already faced many terrible challenges in life, yet he refuses to give up because he loves life and we love him. Contribute to the creation of his life.

Official Vakaris loves life foundation Facebook page: https://www.facebook.com/Vakarisloveslife