Rised:
2024 year: 926 146 ₴13 years: 57 261 989 ₴
Expensive medicine for priceless life
128,380 hryvnias were collected. A total of UAH 65,076,371 was collected.THE COLLECTED FUNDS ARE TRANSFERRED AND INTO THE GENERAL ACCOUNT OF NICKNESS, FOR PAYMENT OF TREATMENT.
Dear friends!
Fundraising for Zolgensma for Nikita Kryzhny is closed. All the necessary amount of 65,076,371 was collected by the parents and volunteers of Nikita .
--------------------------------------------------- ---------------------------------
Nikita Kryzhny will be helped by expensive medicines .
Nikita lives with his mother, father and two sisters in Kyiv. The boy has a severe genetic disease - spinal muscular atrophy (SMA). A disease that leads to muscle atrophy and gradual loss of motor and respiratory functions. As the baby grows, the muscles of the whole body steadily weaken and stop working. Children with SMA cannot stand, walk and sit without support, bronchi and lungs are clogged with sputum, which is not something that a child, even an adult can not cough normally - so weakened respiratory muscles. Children with this diagnosis die in infancy, and adults remain forever confined to a stroller. But there is a chance to defeat the disease. US scientists have developed the drug Zolgensma, which costs more than $ 2 million. It is these medications that are needed to help Nikita.
When Nikita opens his eyes in the morning, he immediately seeks to explore his world. He wakes up Elena’s mother, Anton’s father and older sisters Vitalina and Karina. Yes, for almost the second year, little Nikita, every morning begins a new life in his little world of the Kryzhny family.
Nikita was born in April 2019. During the birth, Elena had some complications, but it all worked out. The boy was born on time, doctors assured his parents that he was healthy. By three months, the child was developing normally, began to hold his head, roll over - and nothing foretold trouble. But, suddenly, Nikita weakened.
- We have been waiting for Nikita, and when the son was born, our happiness knew no bounds. We were the happiest people on earth, - says Elena, Nikita’s mother. - All scheduled inspections took place, everything was almost normal. But, in three and a half months, we noticed that the activity in Nikita’s legs began to decrease. We began to worry, go to the doctors: neurologists, orthopedists. Doctors prescribed us massages, swimming pools, and said that everything would be fine, everything would pass and the child would walk. But this did not happen ...
It lasted for 8 months. In a year and two months, Nikita did not crawl, did not sit down, could not turn on his stomach and sat with support, only if you put him. The Kryzhny family began endless trips to doctors and medical centers.
"We sounded the alarm and went to Okhmatdyt for an examination," Olena recalls. - After going through several doctors, we came to a neurologist, who examined Nikita and said that the child needed to be examined in the hospital. In Okhmatdit’s neurology, the doctor said almost immediately, "Ninety-nine percent of it is genetics. SMA - spinal muscular atrophy. Do a genetic test.
- The analysis takes a long time, - Elena continues, - and we just had to wait. We were scared, the child hardly moves. If we knew what kind of disease it was, we could start treatment.
The results of genetic analysis revealed a mutation in Nikita, a gene that leads to a rare disease: SMA - spinal muscular atrophy. Hereditary, genetic disease accompanied by loss of motoneurons and progressive muscle atrophy. One of the most common causes of early infant mortality is due to hereditary diseases. Over time, the child can not move his legs, does not hold his head, can not even roll over on his stomach. And with age, the muscles of the larynx cease to function, and the child can not eat on their own, and can breathe only through the device.
- In desperation, not believing that this is happening to our son, we decided to repeat the analysis in a foreign clinic. - Three weeks later, a positive result came from the clinic for SMA - and a few days later, in Okhmatdyt, we were given an extract and the conclusion of a geneticist - crying, recalls Elena.
Mallards began to seek treatment abroad. Learning about gene therapy, which makes it possible to replace a pathological gene with a healthy gene. All you need is one injection, which costs more than $ 2 million.
"We are in despair and great despair when we look into Nikita’s eyes," says Olena, wiping away tears. - My heart is breaking. We are worried that our son’s life span may be so short that he may leave us so young. I have a feeling that when Nikita looks me in the eye, one question is in his eyes: "Why aren’t we doing everything we can to save him?"
Nikita can not play with peers, can not enjoy childhood and can not enjoy simple things. But he feels, sees and hears this world, thanks to his family, who dream of happiness from his first words, first laughter and the first steps he would take towards them, so cheerful and sincere, with a bright smile and happy, full of questions to of this world through the eyes.
"Little ... Nikita ... Beloved boy," his parents speak to him in two voices, and then there is pain in their voices, but not despair.
- Nikita is smiling. Anton takes his legs in his hands and bends them, as if somewhere in the very hiding places of the soul he hopes that the signal born in his brain, passing through the spinal cord, will enter through his arm into Nikita, and he bends his legs himself.
The baby continues to lie with his eyes closed in his mother’s arms, and when everyone leans over, he opens his eyes and looks at the adults seriously, as if he were much older than them. In this view, babies with drooping legs are a world in which the answers to many questions can be seen, and one of the most important: "Will we help Nikita?"
Author Roman Betsenko
Photo from the personal archive of the family
Director of the Ukrainian Medical Center for Rehabilitation of Children with Organic Nervous System Lesions of the Ministry of Health of Ukraine Volodymyr Martyniuk: "Nervous system disease - spinal muscular atrophy life threatening. Nikita Kryzhny was diagnosed with spinal muscular atrophy. The child will be helped by the drug Zolgensma (Zolgensma), which has passed the experimental level of research and is moving to the level of practical use, providing a theoretical opportunity not only to influence the pathological gene, but also to replace it with a healthy one.
University Hospitals Cleveland Medical Center has billed Zolgensma, concomitant therapy and rehabilitation for $ 2.3 million ( UAH 65,076,371 ).
Dear friends! If you decide to help Nikita Kniz, don’t be confused by the price of salvation. Any of your donations will be gratefully accepted. You can help 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 donations by credit card or e-cash, including from abroad,and also, to transfer Nikita’s help by means of a peer-to-peer payment system, having transferred bitcoins to the Fund’s wallet: 1UFondJDKbYMgVhWsyijyvJoWEGWPggNp.
Responded (took details): 365 people and 5 companies
Helped: 365 people and 5 companies
Collected: 128 380 UAH
Dear friends!
Fundraising for Zolgensma for Nikita Kryzhny is closed. All the necessary amount of 65,076,371 was collected by the parents and volunteers of Nikita .
--------------------------------------------------- ---------------------------------
Nikita Kryzhny will be helped by expensive medicines .
Nikita lives with his mother, father and two sisters in Kyiv. The boy has a severe genetic disease - spinal muscular atrophy (SMA). A disease that leads to muscle atrophy and gradual loss of motor and respiratory functions. As the baby grows, the muscles of the whole body steadily weaken and stop working. Children with SMA cannot stand, walk and sit without support, bronchi and lungs are clogged with sputum, which is not something that a child, even an adult can not cough normally - so weakened respiratory muscles. Children with this diagnosis die in infancy, and adults remain forever confined to a stroller. But there is a chance to defeat the disease. US scientists have developed the drug Zolgensma, which costs more than $ 2 million. It is these medications that are needed to help Nikita.
When Nikita opens his eyes in the morning, he immediately seeks to explore his world. He wakes up Elena’s mother, Anton’s father and older sisters Vitalina and Karina. Yes, for almost the second year, little Nikita, every morning begins a new life in his little world of the Kryzhny family.
Nikita was born in April 2019. During the birth, Elena had some complications, but it all worked out. The boy was born on time, doctors assured his parents that he was healthy. By three months, the child was developing normally, began to hold his head, roll over - and nothing foretold trouble. But, suddenly, Nikita weakened.
- We have been waiting for Nikita, and when the son was born, our happiness knew no bounds. We were the happiest people on earth, - says Elena, Nikita’s mother. - All scheduled inspections took place, everything was almost normal. But, in three and a half months, we noticed that the activity in Nikita’s legs began to decrease. We began to worry, go to the doctors: neurologists, orthopedists. Doctors prescribed us massages, swimming pools, and said that everything would be fine, everything would pass and the child would walk. But this did not happen ...
It lasted for 8 months. In a year and two months, Nikita did not crawl, did not sit down, could not turn on his stomach and sat with support, only if you put him. The Kryzhny family began endless trips to doctors and medical centers.
"We sounded the alarm and went to Okhmatdyt for an examination," Olena recalls. - After going through several doctors, we came to a neurologist, who examined Nikita and said that the child needed to be examined in the hospital. In Okhmatdit’s neurology, the doctor said almost immediately, "Ninety-nine percent of it is genetics. SMA - spinal muscular atrophy. Do a genetic test.
- The analysis takes a long time, - Elena continues, - and we just had to wait. We were scared, the child hardly moves. If we knew what kind of disease it was, we could start treatment.
The results of genetic analysis revealed a mutation in Nikita, a gene that leads to a rare disease: SMA - spinal muscular atrophy. Hereditary, genetic disease accompanied by loss of motoneurons and progressive muscle atrophy. One of the most common causes of early infant mortality is due to hereditary diseases. Over time, the child can not move his legs, does not hold his head, can not even roll over on his stomach. And with age, the muscles of the larynx cease to function, and the child can not eat on their own, and can breathe only through the device.
- In desperation, not believing that this is happening to our son, we decided to repeat the analysis in a foreign clinic. - Three weeks later, a positive result came from the clinic for SMA - and a few days later, in Okhmatdyt, we were given an extract and the conclusion of a geneticist - crying, recalls Elena.
Mallards began to seek treatment abroad. Learning about gene therapy, which makes it possible to replace a pathological gene with a healthy gene. All you need is one injection, which costs more than $ 2 million.
"We are in despair and great despair when we look into Nikita’s eyes," says Olena, wiping away tears. - My heart is breaking. We are worried that our son’s life span may be so short that he may leave us so young. I have a feeling that when Nikita looks me in the eye, one question is in his eyes: "Why aren’t we doing everything we can to save him?"
Nikita can not play with peers, can not enjoy childhood and can not enjoy simple things. But he feels, sees and hears this world, thanks to his family, who dream of happiness from his first words, first laughter and the first steps he would take towards them, so cheerful and sincere, with a bright smile and happy, full of questions to of this world through the eyes."Little ... Nikita ... Beloved boy," his parents speak to him in two voices, and then there is pain in their voices, but not despair.
- Nikita is smiling. Anton takes his legs in his hands and bends them, as if somewhere in the very hiding places of the soul he hopes that the signal born in his brain, passing through the spinal cord, will enter through his arm into Nikita, and he bends his legs himself.
The baby continues to lie with his eyes closed in his mother’s arms, and when everyone leans over, he opens his eyes and looks at the adults seriously, as if he were much older than them. In this view, babies with drooping legs are a world in which the answers to many questions can be seen, and one of the most important: "Will we help Nikita?"
Author Roman Betsenko
Photo from the personal archive of the family
Director of the Ukrainian Medical Center for Rehabilitation of Children with Organic Nervous System Lesions of the Ministry of Health of Ukraine Volodymyr Martyniuk: "Nervous system disease - spinal muscular atrophy life threatening. Nikita Kryzhny was diagnosed with spinal muscular atrophy. The child will be helped by the drug Zolgensma (Zolgensma), which has passed the experimental level of research and is moving to the level of practical use, providing a theoretical opportunity not only to influence the pathological gene, but also to replace it with a healthy one.
University Hospitals Cleveland Medical Center has billed Zolgensma, concomitant therapy and rehabilitation for $ 2.3 million ( UAH 65,076,371 ).
Dear friends! If you decide to help Nikita Kniz, don’t be confused by the price of salvation. Any of your donations will be gratefully accepted. You can help 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 donations by credit card or e-cash, including from abroad,and also, to transfer Nikita’s help by means of a peer-to-peer payment system, having transferred bitcoins to the Fund’s wallet: 1UFondJDKbYMgVhWsyijyvJoWEGWPggNp.
Responded (took details): 365 people and 5 companies
Helped: 365 people and 5 companies
Collected: 128 380 UAH