In Ukraine, a unique operation was performed on a “crystal child” with rare genetic diseases

Such an operation became possible thanks to the invention of a rotationally stable intramedullary telescopic fixator with a growing part for the femoral neck. The production was financed by a Ukrainian businessman, founder of the Renaissance Medico Charitable Foundation Vladimir Manukyan.

At the end of March 2020, Ukrainian orthopedic surgeons performed a unique operation to reconstruct the lower limbs of a 7-year-old boy Zhenya with a rare combination of complex genetic diseases – Escobar syndrome and osteogenesis imperfecta (“crystal people”).

The operation took place in 4 stages and became possible thanks to the invention of the leading engineer of Vostok-N, Andrey Kovalev.

This was announced by the head of the department of pediatric orthopedics of the Institute of Pathology of the Spine and Joints. Sitenko, Professor Serhiy Khmyzov in his Facebook post, Ukrainian News Agency reports.

 “Such a combination of genetic syndromes has not been previously described in the orthopedic literature. Throughout his life, the boy had 7 low-energy fractures of the upper and more than 30 lower extremities. The child does not stand or walk. We have performed several complex operations to reconstruct the lower extremity using a unique technology , invented by Andrey Kovalev, engineer of the Kharkov Vostok-N plant,” Khmyzov said.

He explained that the generally accepted world “gold” standard in the treatment of patients with osteogenesis imperfecta is the Fassier-Duval telescopic (“growing”) rod (Canada, Pega Medical). But, this design is not registered in Ukraine, and besides, it is very expensive.

“In addition, the Fassier-Duval rod is rotationally unstable, which could cause difficulties in the treatment process (additional fixation is needed) and complications (spiral fractures and rotational deformities). In addition, it does not have fixation of the femoral neck. Therefore, we had to look for another, more suitable solution. And engineer Kovalev found it. He did the virtually impossible – he created a rotationally stable intramedullary telescopic fixator with a growing part for the femoral neck,” the surgeon noted.

The production of the first samples of the new rotational fixator was financed by a Ukrainian businessman.

According to Khmyzov, before applying a new fixator during the operation, it was necessary to settle a number of bureaucratic nuances – to obtain a permit for production, ISO certificates.

He added that at some point everything was in jeopardy, but there was support from business and public organizations.

A significant contribution to supporting the production of new systems of rotationally stable telescopic clamps was made by businessman Vladimir Manukyan.

“There was a systemic crisis and the domestic certified production, which is located in Kharkov, was in a very difficult situation. He supported the production in difficult times. Vladimir Manukyan contributed his technical ideas for the creation of specialized equipment for deep drilling of tubes, as well as a robotic installation for laser welding of these He helped with the selection, purchase and delivery to the country of non-standard imported tools and special alloys for production. Also, the public patient organization “All-Ukrainian Association of Crystal People” and its representative Lyubov Petrova did a great job,” Khmyzov emphasized.”

As Vladimir Manukyan noted, support for domestic scientists and developers in the field of medicine, who find ways to solve complex problems where modern high-tech solutions are needed, has become one of the priority areas of charitable activities for him.

Vladimir Manukyan (photo from open sources)

“There are many medical scientific developments in Ukraine, which, unfortunately, the state does not finance in the required amount. As the founder of the Renaissance Medico charitable foundation dealing with the problems of “crystal children”, I am very interested in the development of Ukrainian technologies and solutions that can help in treatment of people with such diagnoses. After all, the doctors themselves are convinced that this is a disease, and not a sentence. Therefore, businessmen, philanthropists should unite with scientists and doctors to give the “crystal people” such a chance”, Manukyan commented.