The boy from Odessa overcame a rare genetic disease and regained his life

Last year, Odesa became the center of attention thanks to the touching story of little Lev and his family.

The boy was born with a rare genetic disease called Beckwith-Wiedemann syndrome, which resulted in an abnormally large tongue.

Lev’s tongue was five times longer than that of a normal child. His parents noticed the anomaly during pregnancy when, during an ultrasound examination, the doctor noticed that the unborn boy often showed his tongue. At first, it seemed cute, but later, the doctors made an unpleasant diagnosis. This was reported by “Okhmatdyt” on Facebook.

Despite the serious illness, Lev was born a healthy boy weighing over 4 kilograms. However, the large tongue created severe difficulties for him because he could not even drink from a bottle, let alone eat solid food. Doctors from Odesa concluded that there were no experienced specialists in Ukraine to treat such a disease, so the parents were advised to seek help abroad. However, thanks to friends in Lviv, they learned about American doctors who regularly visit Ukraine.

After consulting with foreign colleagues, Lviv surgeons undertook a complex operation to shorten Lev’s tongue. As Roman Ogonovsky, head of the medical center, explained, the doctors had experience performing similar operations on tongue tumors in adults. Still, the operation for a child was completely new.

Surgeons from Ukraine and the United States successfully performed a partial resection of Lev’s tongue using modern technology. The main goal was to shorten the tongue and ensure that Lev could eat, breathe, and speak without difficulty.

The operation was successful, and the boy’s tongue is now almost normal in size. For the first time in his life, Lev can easily hide his tongue in his mouth. Now, he is learning basic skills—eating, drinking, and talking—and his mother, who is a speech therapist, will help him with this.