Guest
Today, I share with you a very personal song that I wrote for my twenty-three-month old son Viljem Julijan. The song is very intimate, because it was created within me, during the most difficult moments of the struggle for my sons life. Viljem Julijan has an incurable, extremely rare fatal disease of the genetic origin, gangliozidosis GM1 type 1 and he has, in my infinite sadness, in the opinion of doctors, only a few months before him. So I wrote the song My Eternal Love, because my connection with him and my love for him, despite of the cruelty he is going through, is eternal and immense. The ballerina in the video is his four and a half year old sister, Ella Vita, who has danced ballet for her brother. An infinite thanks goes to my wife, Nina, who invests in love every day. And love is the winning force in our family. My wife is nevertheless, as well, unconditionally and bravely facing her greatest pain every day. Thank you Nina for loving me on our demanding journey, and thank you for giving our song your beautiful voice. I also commit this song to all children and their families, who are affected by a rare, incurable disease, such as ganglioidosis. I share this song with you on this day, because it is today a worldwide day of rare diseases and I want to give my support to all children, in the world, with rare diseases and their families. I dedicate this song especially to you. In this moment, I ask all people of good hearts to give care and send good thoughts to Viljem Julijan and to all the children with rare diseases. I thank you for your support. I also thank my accompanying BigLights Band for all your support. For your sweet performance in the video and for the great and wonderful performance of the song. Today my wife Nina and I are primarily opening the song “My Eternal Love“. The song and video symbolizes the opening of the charity fund for children with rare diseases. The fund is called Viljem Julijan Foundation. It is established in cooperation with non-governmental organization Eksena Society. Our wish is that the fund reaches it`s full extent, so it can function in the long run. We wish, that through this fund, we can help as many families and children as possible. Viljem Julijan, I love you infinitely! You are always and you will always be in my heart. Your father, Gregor Bezenšek (SoulGreg Artist) Credits: Written, arranged, produced, mixed and directed by SoulGreg Artist. Performed by SoulGreg Artist and BigLights Band. Video production: MediaVibre Camera 1: Tomi Šenveter Camera 2: Marko Jelen Drone: Boris Branovič Editing and post-production: SoulGreg Artist & Tomi Šenveter Thank you goes out to Tibor Vučkovilč for some technical video equipment contribution. BigLights Band: Miran Pečnik – Bass Guitar; CEO Uroš Eferl – Guitar; Tomaž Jelen – Drums; Damjan Vajde -Saxophone Mojca Eferl – Piano; Dejan Žafran - Vocal, Keyboard Nina Bezenšek – Vocal Tina Teršek – Vocal Ajda Bezenšek – Vocal Kornelija Vajde – Vocal Make Up - Bernarda Selania Hair styling: Nejc Radolič - Nejc Hair Spa Barbara Čučko - dance teacher (Ella Vita, balet) Techincal crew: Boris Pečnik Gorazd Oprešnik Klemen Zidanšek Bojan Špetič We would like to thank SNG Maribor for allowing us to use their concert hall (Kazinska dvorana) Lyrics: Baby, you are my shining star, shading tears of love for you each night. Beautiful angel of mine, you are my eternal love.
