Touching Tribute: Ori Passed Away, His Family Spreads His Light

Ten years ago, Shaul and Ravit Levi lost their eldest son, Ori, of blessed memory, who passed away at two years and three months old. "When Ori was two years and two months old, he was diagnosed with Leigh syndrome. For a month, he faded before our eyes and passed away. It was terrible," Ravit tells ynet.

She continues: "Only after he died did I start to process the tragedy and this horrible loss. Recognition of what happened comes in waves. Everything runs through your mind, and then it sinks in. Ori won't come back, we won't see him again. I can't hug him, laugh with him, or watch him grow. It's no longer a bad dream — that's how it will be from now on. The void is vast, and most of the time I can't comprehend how to continue without him. He was our life. Our little boy, the light of the house."

Leigh syndrome is a severe and rare mitochondrial disease. "There was almost no information in Israel or worldwide about these diseases, and we felt we had to do something in this darkness and lack of awareness," says Ori's mother. "We established an association named 'Ori's Foundation'. The idea to create an association arose when Ori was alive, hoping to find information, research, or anything to save him or advance research in the field. Orphan diseases are ailments that pharma companies and various entities do not promote."

As part of the foundation's activities and Ori's memorial, the Levi family decided to initiate the distribution of dreidels in children's wards nationwide. "We crafted thousands of wooden dreidels in three different designs that a close friend designed, inspired by Ori's loves. He greatly loved stars and butterflies," Levi shares. "The funding is private because every donation we raised for the foundation is intended solely for research and support for families in need. Additionally, suppliers and friends who heard about the project helped with cost prices, and others were friends, family, and volunteers who joined to help."

"Ori, as his name suggests, was the light of the house"

Why dreidels? "Ori, as his name suggests, was the light of the house who lit up our lives and smiled a lot," Ravit replies. "He always loved holding an object in his hand, especially a dreidel, and if possible — in both hands for balance... he adored spinning them and would ask for them to be spun. He had dreidels in all colors and sizes. Things that spun thrilled him," Ravit recalls with longing.

'Ori's Dreidels' are distributed by volunteers, family members, and friends who wish to spread Ori's joy, a magical child who, in his short life, managed to fill the world and bring happiness to everyone around him.

Ori's Dreidels

The reactions from the sick children receiving the dreidels have been touching to tears. "My dream of having the dreidels bring smiles and a desire for children to play with them has come true," says Ravit tearfully. "I'm overwhelmed with heartwarming responses like 'We were blessed with many smiles', 'It was wonderful, thank you for the privilege of bringing joy to children and performing a mitzvah'. The medical staff is moved by the investment, the volunteers going from ward to ward, and the accompanying activities. Most hospitals get volunteers, balloon artists, or medical clowns and a wonderful staff accompanying the activity distributing dreidels to every child. Everything is coordinated with the medical staff."

Ravit promises that the association will continue to distribute dreidels in all hospitals across the country. "We are overwhelmed with requests," she says, "We will reach every hospital in the country, and we will also distribute in dormitories and Beit Loewenstein."

"I want Ori’s Dreidels to become a tradition and his light to spread every year," the mother shares her dream. "Another dream of mine is that there will be a breakthrough in this field through raising awareness and promoting research on the subject. I believe it's possible, every study we fund exposes more genes and leads to change."

The Levi family's tragedy occurred ten years ago. Since then, Ravit has had two more children - Yuval (10.5) and Nitzai (8.5), and the family dedicates themselves fully to advancing 'Ori's Foundation'. The foundation's goal is twofold: support families and help children suffering from mitochondrial diseases or other rare genetic disorders to extend their lives and improve their quality through advancing the topic and public awareness.

Additionally, the foundation provides psychological and technical support to parents dealing with these diseases, parents who have experienced the loss process, and parents facing similar situations.