Volodya spent 16 years in a wheelchair due to an extremely rare genetic disease that could not be detected in any way. And now he dreams not just to walk, but to play football. And the doctors of St. Nicholas Hospital of the First Medical Association of Lviv are helping him realize this dream.
Volodya is 20 years old. He was born a healthy-looking boy. But at 2.5 years old, his legs began to weaken, and his left foot deviated to the side. At first, it became difficult for Volodya to walk, and later it became completely impossible. In addition, the boy’s speech was getting worse. The parents kept taking their son to the doctors, but all in vain.
What is happening with Volodya – we found out by accident. A few years ago, the boy’s mother saw on TV the story of a girl who suffered from a rare disease. The symptoms of her illness coincided with those of Volodya. Doctors confirmed the diagnosis: torsion dystonia. This is a rare genetic disorder in which the brain sends the wrong impulses to the muscles. Because of this, the patient’s body twists, and severe pain appears in the muscles. In Ukraine, about 100 people suffer from this disease.
Torsion dystonia cannot be cured, but the manifestations of the disease can be eliminated. A neurostimulator is implanted into the brain of patients – a device that delivers the correct impulses to the brain. Volodya also installed one. Kyiv specialists did it. After the operation, the boy felt much better. He started exercising, eating and speaking better. However, years without proper diagnosis and appropriate treatment changed Volodya’s body. Both of his feet were turned completely inwards. So they had to be surgically leveled.
Complex reconstructive operations were carried out by specialists of the orthopedic and trauma department of St. Nicholas Hospital in Lviv. In addition, Volodya developed neuro-paralytic scoliosis. The boy’s spine was curved as much as 102 degrees. Because of this deformity, Volodya could not keep his balance and leaned to one side. He mostly lay down and sat, and could only walk with support. I also had a severe headache.
In order for the boy to maintain coordination while walking, he had to undergo a complex operation on his spine. When the famous spinal surgeon Mark Dyrzka and neurophysiologist Brian Demboski came to St. Nicholas Hospital from the USA, the specialists of the hospital – orthopedic traumatologist Maryan Orach and the head of the department Galina Hachkevich decided to operate on the boy together.
During the surgical intervention, American and Lviv doctors corrected the spinal deformity, stabilized it and applied metal structures to prevent the curvature from progressing.
After a complex operation, the boy will have a long recovery and then rehabilitation. But Volodya already sits and walks much better. The boy dreams, first of all, to start walking on his own, and then to play football in one of the largest stadiums in Ukraine.