Tom’s mother saw him for the first time after his birth. That’s how he was listed in the database of orphaned children. The boy’s name was Ali.

The story of how a rejected baby with a complex pathology met people who helped him survive, see the world, and stop being invisible, all in the hope of finding a mother as soon as possible, is told by Polina Ivanushkina in an article for Arguments and Facts.

Ali’s video profile was created by the “Change One Life” foundation to help him find a family. At that time, he lived in complete darkness. After the surgery, which allowed Ali to see the world, a new profile was filmed post-quarantine, hoping that the second video would help him find a mother.

Three and a half years ago, Arguments and Facts published a photo that nobody who saw it could forget. An 11-month-old boy with eye sockets that couldn’t contain his eyes and a triangular-shaped skull.

Tom’s mother saw him for the first time after his birth. That’s how he was listed in the database of orphaned children. That’s how he was when I came to his ward at the Burdenko Institute in Moscow 3.5 years ago (the Arguments and Facts foundation was raising funds for the necessary operation on the skull) – only his eyelids were already sewn. The boy’s name was Ali H.

“Ali’s eyes don’t produce tears,” explained the head of the department, Sergei Gorelyshev. “We had to sew his eyelids to prevent the drying of the eyeballs.” And the nurse assigned to Ali by the care and custody system reasoned in a down-to-earth way: “Put a cloth on his head – and it’s like nothing, a good child.” And she kissed his fingers…

And then Ali disappeared.

Read also – Who will save Ali? A boy with Pfeiffer syndrome urgently needs surgery

And only at the end of February 2020, he returned. Because someone remembered him all this time and thought that the guy where he is, is constantly bathed in tears. From the inside.
Photo – AiF / Polina Ivanushkina.

And now, a different nurse, assigned to the boy by the Volunteers to Help Orphaned Children foundation, initiates a video call for me (due to restrictions on visits to Ali, you can’t come, but it’s not unusual for him) – and I see the same picture as 3.5 years ago.

Only now, Ali also has an iron device on his head, designed to stretch the bones of his skull and “bring his head into order.” From this, he becomes completely similar to a Martian. “The distractor is his favorite toy, Ali constantly touches it, turns the screws with his hands,” says Professor Gorelyshev. “It proves his active life position!”

The boy fights – even where he is.

The skull was “unwound” millimeter by millimeter.
Once upon a time, there was a boy. Maybe Russian, maybe Uzbek, more likely a mixture. He lived only a few seconds in the world. But his mother, fingers already stiffened with grief, wrote a “refusal” from him – or maybe with relief, we will never know.

And Ali went alone to weave the threads of his destiny, and until that day, he was most interesting to official statistics and rare people. About them, we will tell now. And we’ll ask if there is anyone else here…

Pfeiffer syndrome is a complex pathology of the formation of all skull bones, dangerous because the growing brain is trapped in a tight box, which is not often encountered even at the Moscow Institute of Neurosurgery named after Burdenko, and in provincial Ulyanovsk, such a child was clearly seen for the first time.

His eyes are protruding and hurting; he eats with difficulty because he chokes – feeding him is a whole story, and his development is delayed because the brain is compressed. In general, when Ali ended up in the children’s home, he immediately ended up on the “back burner” of his story. And no one, except the institution’s staff, would have ever seen him if volunteers had not infiltrated here one day. And found Ali there…

They broke through hospitalization in Moscow, bypassed all obstacles that the system methodically sets for such independent actions. And the guy got to the best specialists in the country for Martians.

“Ali came so exhausted… We put him on a fortified diet. And he began to gain weight quickly!” – said the doctors at that time.

We told about the boy in Arguments and Facts and raised funds for the distractor – a metal device installed on the bones of the skull, gradually spreading them, putting them in place millimeter by millimeter by daily tightening the screws with a special key. Ali froze as if listening to what was happening inside his head when the nurse took the magical key in the morning…

After that, a plan for further operations was outlined, the first director of the Arguments and Facts Good Heart Foundation, Margarita Shirokova, managed to arrange Ali for a while in a suburban home for children so that he would be closer to his doctors, and everyone waited for the boy to find a mother…

But the mother did not appear.

Ali H.’s last chance.

And Ali went through the stages. Returned to his place. And since then, nothing has happened in his life. Readers of Arguments and Facts still wrote us letters – are there any news about Ali H.?

Trenches were dug at the level of the Ulyanovsk Ministry of Health.

The defense was broken by the lawyer of the Volunteers to Help Orphaned Children foundation Natalia Yudina. Many acquaintances and strangers helped us and sympathized. And the responsive were found where they least expected to meet them. And at the end of February, a doctor from the Rodnik boarding school, where Ali was transferred in November 2019 after he turned 4, brought him to Moscow.