Rised:
2024 year: 926 146 ₴13 years: 57 261 989 ₴
Rare name, rare diagnosis
COLLECTED UAH 29,150. The medicine was paid for and transferred. A story under the story
Five-year-old Kyiv resident Sviatoslav Humennyk needs help in treating a rare disease.
Svyatoslav has a very rare genetic disease - tuberous sclerosis, symptomatic epilepsy with frequent generalized seizures. The boy needs a monthly dose of an expensive drug that inhibits the growth of brain tumors, thus saving the child’s life and will avoid life-threatening neurosurgery.
Tuberous sclerosis (Burneville’s disease) is a rare genetic disease in which benign tumors form in many organs and tissues. The polysystemic nature of the disorders generates a wide range of symptoms - brain damage, decreased intelligence; affected internal organs - kidneys, heart, lungs. One of the worst manifestations of this disease is epileptic seizures. They have to be treated with potent drugs that have many side effects. In addition, patients with tuberous sclerosis have delayed mental development of varying severity.
- This year my only son Svyatoslav turned 5 years old. A month before his birth, I fully felt in my soul a completely new state for myself, which, unfortunately, is familiar to many, - says Julia, Svyatoslav’s mother. - When in the 8th month of pregnancy you are diagnosed with tuberous sclerosis "the earth is coming from under your feet", you immediately look for a wall on which you can lean. Only over time do you realize that this "wall" is inside you.
Frequent hospitalizations, constant medication changes, epileptic seizures, endless trips to examinations and consultations in various medical institutions - the Humennik family began difficult years. All these long five years, Julia did not sit still, doing everything possible to help her child. Moving to Kyiv, changing professions - and all in order to help Svyatoslav independently and efficiently. During this time, specialists managed to find the right anticonvulsant therapy and treatment for Svyatoslav. The boy was slowly growing and developing.
- In December 2017, we underwent a routine MRI examination, all standard anesthesia - 45 minutes of alarm - conclusion. The words of Professor of Neurosurgery Verbova Lyudmila Nikolaevna, frozen in the ears - the brain tumor is located in a dangerous place and is progressing, you urgently need to introduce expensive anticancer therapy.
There is no state funding for the purchase of the necessary drugs for Svyatoslav. Julia applied to the Ministry of Health, the City Council, there is no support from anyone. No Ukrainian family is able to afford such treatment on its own. The Humennik family lives on Yulia’s usual, average salary, which is enough for the most necessary things for life. Therefore, Svyatoslav’s mother asks for our support.
- I believe that everything will work out for us, because God helps people with the help of other people, - says Julia.
Written by Lev Katkov
PhotoAnna Zagorska
Head of the Department of Neurooncology of the Institute of Neurosurgery named after Academician AP Romodanova Verbova Lyudmila Nikolaevna: «Svyatoslav has tuberous sclerosis. The child needs long-term use of the drug "Afinitor" with the active substance "everolimus". This drug inhibits the growth of brain tumors, thereby saving the life of the child and will avoid life-threatening neurosurgery.
The cost of the necessary drugs is UAH 29,150.
Dear friends! If you decide to help Svyatoslav Humennyk, don’t be embarrassed by the price of salvation. Any of your donations will be gratefully accepted. Money can be transferred by sending an SMS with the word GOOD to the number ####. The cost of SMS-messages is UAH 9. You can send a donation by bank transfer to the Fund. All the necessary details are in the fund. You can also use our electronic payment system by making a donation from a credit card or electronic cash, including from abroad. And also on the website of the Ukrainian Charity Exchange - Tumor Control.
Responded (took details): 60 people
Helped: 60 people
Collected: UAH 29,150
Five-year-old Kyiv resident Sviatoslav Humennyk needs help in treating a rare disease.
Svyatoslav has a very rare genetic disease - tuberous sclerosis, symptomatic epilepsy with frequent generalized seizures. The boy needs a monthly dose of an expensive drug that inhibits the growth of brain tumors, thus saving the child’s life and will avoid life-threatening neurosurgery.
Tuberous sclerosis (Burneville’s disease) is a rare genetic disease in which benign tumors form in many organs and tissues. The polysystemic nature of the disorders generates a wide range of symptoms - brain damage, decreased intelligence; affected internal organs - kidneys, heart, lungs. One of the worst manifestations of this disease is epileptic seizures. They have to be treated with potent drugs that have many side effects. In addition, patients with tuberous sclerosis have delayed mental development of varying severity.
- This year my only son Svyatoslav turned 5 years old. A month before his birth, I fully felt in my soul a completely new state for myself, which, unfortunately, is familiar to many, - says Julia, Svyatoslav’s mother. - When in the 8th month of pregnancy you are diagnosed with tuberous sclerosis "the earth is coming from under your feet", you immediately look for a wall on which you can lean. Only over time do you realize that this "wall" is inside you.
Frequent hospitalizations, constant medication changes, epileptic seizures, endless trips to examinations and consultations in various medical institutions - the Humennik family began difficult years. All these long five years, Julia did not sit still, doing everything possible to help her child. Moving to Kyiv, changing professions - and all in order to help Svyatoslav independently and efficiently. During this time, specialists managed to find the right anticonvulsant therapy and treatment for Svyatoslav. The boy was slowly growing and developing.- In December 2017, we underwent a routine MRI examination, all standard anesthesia - 45 minutes of alarm - conclusion. The words of Professor of Neurosurgery Verbova Lyudmila Nikolaevna, frozen in the ears - the brain tumor is located in a dangerous place and is progressing, you urgently need to introduce expensive anticancer therapy.
There is no state funding for the purchase of the necessary drugs for Svyatoslav. Julia applied to the Ministry of Health, the City Council, there is no support from anyone. No Ukrainian family is able to afford such treatment on its own. The Humennik family lives on Yulia’s usual, average salary, which is enough for the most necessary things for life. Therefore, Svyatoslav’s mother asks for our support.
- I believe that everything will work out for us, because God helps people with the help of other people, - says Julia.
Written by Lev Katkov
PhotoAnna Zagorska
Head of the Department of Neurooncology of the Institute of Neurosurgery named after Academician AP Romodanova Verbova Lyudmila Nikolaevna: «Svyatoslav has tuberous sclerosis. The child needs long-term use of the drug "Afinitor" with the active substance "everolimus". This drug inhibits the growth of brain tumors, thereby saving the life of the child and will avoid life-threatening neurosurgery.
The cost of the necessary drugs is UAH 29,150.
Dear friends! If you decide to help Svyatoslav Humennyk, don’t be embarrassed by the price of salvation. Any of your donations will be gratefully accepted. Money can be transferred by sending an SMS with the word GOOD to the number ####. The cost of SMS-messages is UAH 9. You can send a donation by bank transfer to the Fund. All the necessary details are in the fund. You can also use our electronic payment system by making a donation from a credit card or electronic cash, including from abroad. And also on the website of the Ukrainian Charity Exchange - Tumor Control.
Responded (took details): 60 people
Helped: 60 people
Collected: UAH 29,150