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Ranni's story

Ranni was born on a cold and rainy day.

It was the most magical day, the day I became a mother.

She was born on January 11th 2012, 12 minutes before noon. A tiny baby weighing 2.50 kg. beautiful and delicate.

As soon as you were born I fell in love with you and how weird it is to love a being you’ve only just met, an unconditional love.

Ranni arrived home after spending a week in the hospital where she was kept for drastic weight loss, untypical for newborns. When she came home, her loyal dog, Matilda, waited by the door excited to meet this quiet, calm baby that came into her world and into mine.

Ranni began smiling early, turned from back to belly and belly to back incredibly fast, she did not like to stay on her belly, even for a moment. An alert and wise baby, so small and charming, with a smile and eyes that capture you. Your beauty was endless and not a soul could help but admire your angel face and golden locks of hair. Your name fit you so well, you were my Ranni, a real queen (in Hindu Ranni means queen.

At 8 months Ranni began muttering her first syllables which turned into first words, she would roll around the house, screaming and laughing, pure joy. The turn came at 9 months when her left eye became cross, then came constant vomiting, seizures, weight loss and refusing to eat. Ranni was late with her motor milestones, she did not sit, stand or carry weight on both legs. Running from one doctor to another, they all said she was fine, that I should let her grow in peace, and I did.

On November 2012, we took an unforgettable trip to Paris where we made everlasting memories and took many pictures and when we returned, Ranni had lost her ability to cry. It was a very bad sign to accompany all the previous ones, I began with regular blood tests, I wanted to believe it could be a vitamin deficiency that could temporarily affect an ability to cry. All the tests came back normal, but I felt deep down, my Ranni, she was not like everybody else.

On the first candle of Chanukah, it was pouring outside, a wintery Friday, I took Ranni to the wonderful Dr. Omer Bar Yosef’s home. He checked you for hours, every syllable, every turn, every grab of a toy. He nodded his head and sat down at his computer. I sat silent. Afraid to ask what is wrong with my child. He handed me her anamnesis and asked me to promise not to google this very strange pair of words: “metabolic disease”. This pair of words have symbolised to me the beginning of a sad and hard fight, the fight for her life, my heart, my Ranni.

Ranni was hospitalised for a week, countless tests and countless pricks of a needle, and she did not make a sound. The neurologist refused to believe it’s a metabolic disease.

On January 2013, two days before her first birthday, I have received the saddest news I could get, my Ranni is sick with a progressive illness, a bad one, with no cure, a metabolic mitochondrial disease. Ranni has Leigh syndrome. The terrible prognosis that told me that Ranni will not go to first grade, she will not go to the army and she won’t get on that plain to Australia, for her post army journey. Ranni will not make it to the age of two.

Mr. Leigh has turned my life around and changed the path I was taking.

Ranni was fading away before my eyes, she stopped making eye contact, making sounds and turning over. From a happy and smiling baby, Ranni turned into a helpless creature who feeds through atube in her belly, unable to respond to her environment.

When you become a parent, you take an oath, never to give up on your child, you will do anything for him or her, to the end of the earth, because such a love towards a child, it crosses galaxies and planets, and that is what I’ve done, I did not give up, I contacted the best neurologists and geneticists in the world, I took the help of a multi-disciplinary staff  who taught Ranni how to communicate again, how to eat and how to express her wisher (with the help of an extraordinary occupational therapist). And so it was. Ranni got stronger, started smiling again, making sounds even, I felt we were winning against all bets.

It was Ranni’s swan song.

Six months after she was diagnosed, Ranni lay in the intensive care due to an acute neurological crisis. She was put to sleep and placed on life support, and six days later she past away, one year, six months and two weeks old.

Ranni was buried in the cemetery in Giv’at Shaul, Jerusalem.

Not a day goes by that I don’t think about her, talk about her and to her, cry for her loss but thank her for choosing me of all the others, and thank her for the way she appeared and shook my world.

Thank you for coming my magical child. 

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