September 28, 2021, 13:55 4506 Author: Natalia Moroz Fundraising is suspended for the duration of the war, but we will definitely continue it after the victory!
ATTENTION! AS OF 04/02/2022: Fundraising is suspended for the duration of the war, but we will definitely continue it after the victory!
1 in 6-10 thousand people have a mutation in the genes that cause tuberous sclerosis. Gleb got into this statistic, and for seven years now, together with his mother, they have been trying to somehow get along with this disease. With this ailment, almost all organs are affected - the brain, central nervous system, kidneys, heart, skin, retina, digestive tract, lungs, etc. But most of all, the manifestations of the disease associated with its effect on the brain affect the quality of life. in the form of epileptic seizures, developmental delays and autism.
For the first time, the disease manifested itself when the baby was 4 months old. Frequent epileptic attacks with respiratory arrest indicated serious health problems. Then they learned about tuberous sclerosis. We used anticonvulsant and hormone therapy, a special keto diet. And even at some point we achieved remission with a high dose of Sabril. This allowed Gleb to noticeably improve his physical and mental development - he said the first long-awaited words!
Unfortunately, the happiness did not last long, and the attacks returned. Moreover, they have changed greatly, and the previous treatment practically does not help! The last consultation at the City Children's Neurosurgery Center in Kharkov gave me hope for getting rid of epileptic seizures. Leading Ukrainian experts recommended installing a neurostimulator that blocks epileptic seizures.
Vagus nerve stimulation, also known as VNS therapy, is an adjunct treatment for epilepsy when modern medications have failed to bring the expected results and traditional surgical interventions cannot be justified. VNS therapy is indicated and approved in many countries as an adjuvant therapy, that is, a treatment used in combination with another method, usually a drug. As a general rule, with VNS therapy, epileptic seizures should occur less frequently and are much easier to tolerate.
The cost of the VNS-therapy device is 36 080 dollars. This is a huge amount that a small family, consisting of Olga's mother and Glebushka, cannot afford. And the apparatus is a chance to finally start living a full-fledged independent life.
Olga Lavrik: “We are fighting the disease of our son together, me and Gleb. We really need help! Most of all I want to hear the long-awaited "mother" again and see my son happy! We ask all caring people to answer our request and bring us closer to life without pain and seizures, with a chance to catch up with their peers."
