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Ori’s Story

It’s so hard for me to write about my Ori in the past tense. The pictures. The memories. The sounds. Ori is still so alive within me that it’s painful. The loss is immense. It’s difficult to put into words. Who imagined that one day I’d have to tell his story? To commemorate him? That he would all of a sudden disappear from my life? It’s a nightmare from which I’ll never wake up. Each day the pain grows and overwhelms me. We were once a normal family with two sweet children…everything was ordinary and life went on as usual. Ori went to the daycare center every day. Afternoons we’d go out to meet his friends on the playground; once a week swimming lessons…

Dreams…plans…where will we go over the summer break? What are our plans for the weekend? Should we go once again to the petting zoo or maybe to the beach? Is there a new children’s show in town? Ori runs around the house. He bugs his brother Yuval. He takes out Yuval’s pacifier and calls me and says that “he’s spitting out his food”…They’re just beginning to get used to each other…Our small family has grown, and there’s no other more perfect picture of joy…and then…everything fell over and collapsed…within a day.

Ori, a sweet charming baby, was born on June 6, 2004. From the very first moment we fell in love. There was something about him… calm, angelic, serene. He was a textbook baby – he barely cried, slept well at night, no colics…we eased into parenthood. We looked forward so much to Ori. We were ready for parenting. His development was normal and healthy. From the beginning Ori came with us everywhere. When he was only three months old, he flew with us to Barcelona and slept through the flight. We toured the city from dawn to dusk. On this trip we felt like we were on a cloud or in heaven.

When he was eight months old, Ori started to talk…he said ‘dada’ (‘aba’), afterwards ‘mama’ (‘ima’), he could say the Hebrew word for light (‘or’) and other words. Around the age of one year he could already say the Hebrew word for butterfly (‘parpar’) and other more complex words…Ori loved books and songs. He would focus on a game and it would keep him busy for hours. He could sit and hold part of a leaf or a shoelace, and enjoy his new discovery. When he was a year old, he suddenly became cross-eyed in one eye (strabismus). We were very upset, rushed to consult doctors, and went to see a pediatric neurologist. She referred us to have an MRI done, which showed everything was normal. It was decided that the strabismus was due to a problem in the eye; probably a virus that affected the optic nerve. We started treatment with eye patches (how I hate the word ‘virus’). After three weeks the strabismus passed, and we calmed down. I remember how scared we were that he could have been aesthetically affected by this. Those were our fears at the time. Who would have even considered death…

Ori continued to develop, grow, chatter, sing – and the trauma we had lived through was left behind us. It’s true that now we do connect the dots: in the beginning he didn’t gain enough weight, he vomited occasionally which was attributed to his sensitivity to milk. The strange strabismus.

Ori turned into a “little person” who charmed everybody. He loved people so much and received so much love in return. From everyone. By the age of a year and a half he still had not started walking and was diagnosed with hypotonia. Yet again, we were referred to an orthopedic specialist, to physiotherapy, and we were told that it isn’t anything out of the ordinary. We went on a wonderful vacation to Tuscany. I was pregnant with Yuval, and we felt on top of the world. Ori chattered and moved around and flirted with everyone. In his usual manner he charmed people. We enjoyed ourselves so much on that trip – in our perfect intimate family.

When we returned, he started attending Dana’s Kindergarten. Ori adapted in his usual way: quickly, easily, effortlessly, without crying. Ori especially loved Sagi, a lovely assistant who embraced him with so much warmth and love.

When he was a year and eight months old, Ori started to walk, and we were relieved. His memories surround us: how excited he was in his swimming lessons and wanted to jump into the water at once; how happy he was to go on a train ride with his Grandma Hanna, and held on to the tickets all the time; how he liked to take out Yuval’s pacifier from his mouth only to ask him if he wanted it back; how he was at the “what’s that?” phase; how we’d go out with him and Ori would run almost to the street and shout: “It’s forbidden to go on the street. It’s dangerous”; how he loved to tell us new words that he’d just learned; how he’d pick olives from the tree next to the house, flowers according to their color; his mischievous and charming smile; how he loved jasmine flowers – he’d pick them, smell their aroma and say “jasmine”; how he slept through the night holding in his hand a small avocado that he’d picked from Grandpa Moshe’s tree; how he’d list by heart names of foods: “I want quinoa”, and he’d laugh at the sound of the name, sardines, artichoke. We were so happy that he was eating healthy and diverse foods. When he received a toffee or a piece of chocolate, he’d hold it in his hand until it had melted and only then would eat it. He’d ask to put his hair in a ponytail just like mine and would take my hairclip and put it in his hair. He’d enjoy so much turning on all the appliances at home: the TV, the dishwasher, the ACs. He loved to sing songs by heart and would insist: “Only Ori will sing – not mama!” He loved to fall asleep with us holding his sweet hand (“My hand”). He’d finish eating and say “You finished” I always felt that I had been blessed with an enchanting child, the biggest gift in the world one can ever receive. True joy.

‘Orush’ always loved to hold onto an object, especially a spinning top, and if possible with both hands, for balance’s sake…he loved most to spin the tops and ask us to spin them for him…and say: “that’s not right” if it didn’t spin just like he wanted…He had spinning tops in all colors and sizes…Anything that spun excited him. The spinning top became his transitional object.

Ori began to talk at an early age, and so we became accustomed to waking up in the morning to his playful childish voice chattering away, and we’d so enjoy listening to him talking and singing. He talked in complete sentences like a big boy. Each day we’d wake up to his wonderful presence. We had our little rituals – the teeth-brushing ritual, the ‘Gooloo-gooloo’ song, the diaper song, the ‘single-plural’ game that Ori loved, all our little funny habits. Ori discovered shapes and enjoyed so much describing things by their shape – windows are rectangles, tires are round…He could identify a pentagon, a parallelogram, a hexagon…A heart and a star were his favorite shapes. How much he loved to learn new words. How well he understood everything.

עמותת אורי | אורי
עמותת אורי | אורי
עמותת אורי | אורי
הסיפור של ארי

Ori loved stories and would recite them by heart. He remembered entire books. He astounded us with his memory for details. How he learned to count and identify numbers. It was as if he felt he must learn everything fast. He remembered a play in detail, months after he’d seen it. He remembered people’s names and things that he saw only once. Ori loved so much going to the beach. He’d walk around like a little prince, a prince of light. He used to say: “The sun sets in the sea” and would look out to sea and wait for the sunset. Every Friday and Saturday we’d go to the beach. So many moments and memories rise within and overwhelm me. That’s all that’s left.

Ori’s second birthday was magical – I baked him a cake and Ori decorated the cake with heart-shaped sweets. The four of us went to the beach, Shaul bought him a kite and Ori was joyful. Naturally we stayed until the sunset that Ori looked forward to. On the weekend we celebrated with the whole family at the park and I ordered for Ori a magnificent cake with all the things that he loved: stars, hearts and animals, all on a background of vegetation and a sun. It’s so ironic to say that the cake looked like “Ori’s small paradise”.

As he neared his second birthday, sleeping problems began. He often would wake up at night, had trouble falling asleep and we attributed this to the fact that he had a little brother or that he was having typical dreams for his age. At two years and two months, a day before the end-of-the-year party at his kindergarten, we noticed an eye problem. He could not move the eye to the left and had to turn his head. In the beginning we attributed it to tiredness, he looked a little tired, but of course we immediately took him for a checkup.

The incident was too strange and very soon we arrived at the hospital. And so from a small eye problem that the doctors thought was connected to a chicken-pox complication, this monstrous disease was diagnosed.

We started a series of tests and in the end received the terrible news of this terminal illness. We could not truly grasp it. Ori continued normally, other than his eye problem. We refused to believe. Despite the diagnosis, Ori hung around and ran about - happy and full of joy. After the tests, we were released from the hospital and also then, did not imagine that death was approaching. The doctors also did not think so. He stayed at home with Yuval and me. We went on outings, to the pool, to the gymboree. He was all right, walked, laughed until the last week – that’s why it didn’t seem logical at all. I was sure they would find out that this had been a terrible mistake.

From that moment the most important thing was to help Ori. To save him. There was so much fear and anxiety about what will happen. We started looking for saviors: doctors, researchers, we turned to centers around the globe, we searched for medical and para-medical solutions, in nutrition, in alternative medicine, rabbis, and anyone who could help Ori.  Simultaneously, we dealt with the daily bureaucracy of the health services and the hospitals, filling out forms, the insurance coverage – not all the tests were covered by the current health regulations, so every time we would have to retell Ori’s history and explain our distress.

Essentially the hardest thing was to give Ori the feeling that all is well, to be with him, laugh with him, and ease the difficult testing procedures he had to put up with. The testing instruments, the long hours spent in hospitals. To survive this period with supernatural forces, with so much support from our families and good friends, with hope as well. Each one copes with tragic news in a different way. I held on fast with all my optimism and hope that all would be fine, and that this would in the end be a misdiagnosis – Ori is a special child – he will live on beside this, he will overcome this.

Shaul coped better, began to truly understand and come to terms with death’s finality.

Shaul read a lot and found neither hope nor miraculous stories surrounding this illness.

It’s a confusing situation. On the one hand, the medical staff try to prepare you for the possibility that your small and lovely child is going to die. On the other hand, you watch him continue almost as always, and cannot believe that death is nearby.

I wanted everyone – doctors and foreboders – to just leave me alone.

I wanted to shout out that Ori will show them he can overcome this. For me there was no separation process, because his deterioration was so fast and cruel – like a traffic accident. The definitive answer that this was really that illness arrived ten days before he died!

On Saturday we went out with Ori and Yuval and later gave them both a bath together…Ori was hospitalized on Sunday and passed away on Friday. Everything happened so quickly, with emotional ups and downs, which at times aroused hope. Ori’s respiratory system collapsed and he went into a coma. We were told that he would not make it, and then all of a sudden he woke up after several hours in intensive care, sat up in bed and tried to talk…This strengthened us and we felt: despite what they said, he’ll get through this…then again he collapsed, and then again hope.

Only after he passed away, after we sat Shiva (the Jewish period of mourning), maybe after a month, perhaps only now that I’m writing – I began to understand that Ori is not with us any more. I started to grasp the tragedy that we had gone through and the terrible loss of Ori. The blurred awareness of what took place comes back to me bit by bit. Everything runs through my mind and then it hits me. Ori will not come back. We won’t ever see him again. I won’t be able to hug him. To laugh with him. To watch him grow up. The abyss that opened up is immense. This isn’t a nightmare anymore – this is what it will be like from now on. The void is huge, and most of the time I wonder: how can I go on without him? How? He was our life. Our child, the light of our home. Everything revolved around him. How can one cope with grief and step into the light? Everything fell apart in one day. All the dreams. Our togetherness as a small family. Our little rituals. The laughter we shared. The hugs. The little things. His presence – at times I look for him around the house or imagine he’s in another room…the pain is with me throughout the day. There’s no refuge from it. With the passing of time the pain grows even more. Time does not heal; rather it reminds me of the immense loss. It’s an open wound that just gets larger and larger. Sometimes the thought crosses my mind that if Yuval were not here, I don’t know whether we would have continued. I wanted so much that Yuval and Ori would grow up together. That they would have been best of friends.

There is so much fear of death, and the greatest fear is that this could happen again. My innocence as a mother died when Ori died. So much anxiety and pain.

At this point in time we decided to set up the fund which, when Ori became ill, was still only an idea. We understood the lack of awareness of these illnesses, that there is no cure, and that something must be done to help those parents, even if it be only some degree of support. Only a parent who has undergone such a trauma can find the right words to comfort and strengthen another parent. Dealing with the fund and its setup helps us very much to understand that we are not alone. It might sound absurd, but it helps me grow stronger through giving strength to others. It is fulfilling if I can ease, even a bit, another parent’s pain.

The longing suffocates me. It shatters me. I desperately want Ori. Just to hug him. To see him smile once more. To start anew and change the end of the story. I want a normal, joyful life, as we had. To wake up with him, play with him, dance and romp around with him, to go back to the happiness that was. Why? Why do things like this happen in the world? Why do innocent and pure children have to die? There are probably no answers. My “why’s” search and shout out for answers.


My Ori

A sweet and pure child who loved life so much.

Always with a smile.

Enjoyed every moment he lived.

As beautiful as an angel.



Radiating so much light. Adorable.

A simply adorable child.

His smile is forever with me.

A child of joy.

My enchanting child.

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