Fight tumor

Sviatoslav has a very rare genetic disease – tuberous sclerosis, symptomatic epilepsy with frequent generalized seizures. The boy needs a monthly intake of an expensive drug that inhibits the growth of brain tumors, thereby saving the child’s life and avoiding a life-threatening neurosurgical operation. Tuberous sclerosis (Bourneville disease) is a rare genetic disease in which benign tumors form in many organs and tissues. 

The polysystemic nature of the disorders gives rise to a wide range of symptoms – brain damage reduced intelligence; internal organs are affected – kidneys, heart, lungs. One of the worst manifestations of this disease is epileptic seizures. They have to be stopped by potent drugs with many side effects. In addition, in patients with tuberous sclerosis, mental retardation of varying severity is noted.

"This year my only son, Svyatoslav, turned 5 years old. A month before his birth, I fully felt in my soul a completely new condition for myself, which, unfortunately, is familiar to many," says Julia, Sviatoslav's mother. "When, at the 8th month of pregnancy, the diagnosis of tuberous sclerosis "the earth goes under your feet" is pronounced, you immediately look through your eyes for a wall on which you can lean. Only over time, you realize that this “wall” is inside you.

Frequent hospitalizations, constant change of medications, epileptic seizures, endless trips to examinations and consultations in different medical institutions – the Gumennik family began to have difficult years. All these five long years, Julia did not sit, doing everything possible to help her child. Moving to Kiev, changing professions - and all in order to independently and efficiently help Svyatoslav. During this time, the specialists managed to select the anticonvulsant therapy and treatment suitable for Svyatoslav. The child slowly grew and developed.

"In December 2017, we had MRI examination, all standard: anesthesia – 45 minutes of anxiety – conclusion. The words of Professor Neurosurgeon, frozen in my ears – a brain tumor located in a dangerous place and progressing, you urgently need to enter expensive antitumor therapy". There is no government funding for the purchase of the necessary preparations for Svyatoslav. Julia appealed to the Ministry of Health, City Council, there is no support from anyone. No Ukrainian family is able to pull such treatment on their own. The Humennik family lives on Yulia’s regular, average salary, which is enough for the bare necessities of life. Therefore, the mother of Svyatoslav, asks our support with you.

"I believe we will succeed, because God helps people with the hands of other people,” says Julia, Sviatoslav’s mother.

Name: Gumennyk Sviatoslav, 14.06.2013

City: Kyiv region

Diagnosis: tuberous sclerosis (SEGA, multiple heart rhabdomyomas, left-sided hemiparesis, atypical autism)