Surgery for little Sasha

Sasha was born completely healthy — or so it seemed. On her tenth day her body stopped absorbing breast milk, to the point of dehydration. She was moved to a therapeutic formula, and almost at once came signs of intestinal obstruction: food wasn't absorbed, she didn't gain weight, and then she began losing it fast. Her parents ran from one gastroenterologist to another and several times reached the emergency room with obstruction attacks. No one found the cause. And through it all, mentally Sasha was always fine — even ahead of her age.

"She ate — and wasted away before our eyes. We took her from doctor to doctor, and they all said the same thing: wait, she'll grow out of it."

Only at eighteen months did Sasha get a first diagnosis — and it too proved wrong.

In the summer of 2022 the family paid for a thorough round of tests. A diagnosis was made, but a wrong one — and so was the treatment that followed. Half a year of treatment brought no improvement. By then Sasha could eat only two foods, blended. Everything else caused cramps and obstruction attacks.

With her doctors, they tried to widen her diet. It led to a sharp decline: vomiting, rapid weight loss — and her legs simply stopped working. For four months Sasha could not walk. She had urgent brain and spine MRIs, full genome sequencing and electroneuromyography. Frightening diagnoses followed one another — from spina bifida to Leigh syndrome and other neurodegenerative diseases. In the end, none was confirmed. A severe food intolerance causing serious acidosis was simply missed.

"Our daughter is fading away — and we are helpless."

Another hospital stay, another diagnosis — wrong again. Sasha was given a central venous line for permanent parenteral nutrition. But even IV feeding didn't help her grow: severe swelling appeared, and her kidneys were at risk. That year she was recognised as disabled and given palliative status — and with that status hospitals refused to admit her, even to stabilise her. No one could begin treating Sasha — simply because no one knew what she had.

In the summer of 2024, after another attempt to widen her diet, the colitis attacks returned, with stool retention, toxicity and weight loss. In the autumn the acute state was stabilised, but the cause — again — wasn't found. Sasha wasn't yet four, and in all those years no one had come close to the right diagnosis.

Then — gastroscopy and colonoscopy, immunodeficiency tests, an emergency admission with dehydration that couldn't be corrected at home: 17 days of saline drips. Between admissions — gastroenterologists, anti-inflammatory treatment, immunologists, geneticists. And still — no answer.

Sasha was moved first to a children's hospice and from there to the palliative service. The last consilium ended with a document carrying a terrible verdict. Sasha weighed 9.5 kg. She had no strength to play or walk. They had simply given up on her.

"They handed us a page saying our daughter couldn't be saved. A girl with an extraordinary mind — in a body that was fading. We were in shock, and we couldn't accept it."

The parents began looking for help everywhere they could — finding out which medical centres in the world knew of similar cases. That is how they reached Dr. Slae, and how they decided to go to Hadassah. But the flight, the preparations and the admission called for large sums.

Charities refused to help: without a clear diagnosis, no fundraiser could be opened.

By then all the family had left was their flat — every bit of money had already gone on treatment. And the parents decided: to sell the last thing they had, for the chance to cure their daughter.

At Hadassah the diagnosis came within two weeks — desmosis coli, a colon that doesn't function. The ideal age for such a diagnosis is eighteen months. Sasha was already five.

Sasha had an operation to create an ileostomy — to disconnect the damaged part of the bowel and let her eat by mouth again.

The operation took an hour and a half and succeeded, but Sasha went through it with great difficulty: a hard awakening from anaesthesia, three days of morphine by drip, then other painkillers, anti-nausea drugs, a feeding tube — and three weeks in an intensive-observation room.

Within half a year her diet grew to ten foods. Sasha gained more than 5 kg — half her former weight — and grew 7 cm. Today she weighs 15 kg. For the first time in her life she has friends, and a playground instead of a hospital ward. She plays at being a doctor — and dreams of becoming one for real.

"The first thing Sasha asked for when she could sit up was a maths workbook. The whole surgical ward was amazed and right away set up a little study corner for her, with a table and a chair."

Two more stages lie ahead that will give Sasha a chance at a normal life: removing the damaged part of the bowel and closing the stoma.

Every night she is connected to a drip of parenteral nutrition, alongside ordinary food. Because of the lost years her bowel function hasn't fully recovered, so the doctors decided to extend her rehabilitation so she can grow stronger.

But the operation may be scheduled at any moment. Sasha is growing and getting stronger. The hospital's bill has been issued, and the full amount must be paid as soon as the doctors give the green light.

The money from selling the flat ran out at the first stage. The family has nothing left to pay with.

For five years, people gave up on Sasha. Today her recovery is within reach. Help settle the bill for the operation that will save her life — and give this girl the childhood she deserves.