Rised:
2024 year: 926 146 ₴13 years: 57 261 989 ₴
He knows what pain is.
COLLECTED UAH 41,322. All medicines are paid for and given to the family.
Rustam is fourteen years old. He was born with damaged skin, his whole body was like one solid wound. The boy has a severe form of bullous epidermolysis. It is a genetic disease in which the skin is so vulnerable that any touch damages it, causing severe pain. There is a way to protect the fragile "butterfly". This requires special non-stick plasters, soft bandages and ointments to treat wounds. But they are very expensive.
Rustam is the first and long-awaited child in the Tymoshenko family. From birth, he lives with an extremely complex and, unfortunately, incurable genetic disease: a dystrophic form of bullous epidermolysis. The boy’s whole body was covered with painful wounds, fingers and toes fused together, his tongue half growing to the sky. Young parents were shocked by the diagnosis of their newborn son. They didn’t even know if Rustam would survive.
- When I talked to the first doctor Rustam, who diagnosed, she replied: "If such children live to two years, then they will continue to live." But no one gave us any guarantees for life, because the child was very "heavy", - says Ludmila, the boy’s mother.
For the first three months of his life, Rustam was treated, and then doctors released him home, advising his parents to lubricate the wounds with bruises in an aqueous solution and bandage them. But the usual bandages dried on the skin and for a new bandage, they had to be soaked and carefully removed. His extremely sensitive skin could not be injured. This went on for several years.
- We live in a small town, no one has ever heard of such children here, and even more so about their treatment. And for a while it seemed to me that Rustam was the only one in the whole world, - says Lyudmila. - Once I approached my husband and asked: "Why our son and we are so punished?" And he replied: "This is not a punishment, this is a test. We have no choice, we have to cope. We can handle it. " And after that I came to terms with what happened.
It soon became clear that Rustam was not alone in the world. Information about bullous epidermolysis, an unknown disease with a complex name, was collected piecemeal until we learned about the first in Ukraine specialized medical office for patients with bullous epidermolysis - "butterfly children". Medical institution opened on the initiative of the International Public Organization "Dermatologists - Children", the Center "Debra-Ukraine" and with the support of NDSB "Okhmatdet". It is here that Rustam receives the necessary professional medical care, and Ludmila, at any time can get qualified advice, as well as communicate with other families with "butterfly children".
Now the boy is fourteen and only recently, the family began to use special bandages that do not stick to wounds smeared with healing ointments. They are not produced in Ukraine, and parents are forced to buy imported wound care products, which are very expensive. It takes about four hours a day to treat wounds and bandage Rustam. The procedure is painful, difficult, the boy often screams. If you do not bandage your fingers, they will begin to coalesce. If the wounds are not treated, they will fester and bleed.
- He knows what pain is, and he knows it from childhood, - says Lyudmila, once again, bandaging Rustam’s hands.
Tymoshenko’s family spends more than 20,000 hryvnias a month on Rustam’s treatment, and this is the minimum, as the complexity of the disease requires large funds for treatment. In addition, twice a year he needs to go to the hospital and at least once a year go to the sanatorium. There is simply not enough money for everything. In addition, Rustam still has a younger sister, whom parents also need to raise and put on their feet.
Rustam loves his younger sister Masha very much, as she loves him. They spend a lot of time together, sometimes riding bicycles together, it is important that all games were calm and not traumatic, because the slightest carelessness, and new wounds appear on the boy’s body, and with them a new pain.
Rustam is a very smart boy. From first to seventh grade he graduated with honors. Like any child, he has a dream, he wants to become a programmer and is already taking the first steps towards a dream - he has created several test websites.
- Last year, an exhibition of motorcycles was brought to our city, I really wanted to get there, but there was no money to pay for the entrance. Rustam saw that I was upset, took my hand and led me to the exhibition. And on the way, he said that he earned UAH 950 by selling the site, that he wanted to pay for the entrance to the exhibition, just to make me smile. We stopped and I cried.
Special wipes and non-stick plasters, soft bandages, ointments and vitamins can make the boy’s life so difficult. Only all these bandages and medicines are very expensive. And others cannot be used. Rustam’s parents do not have such money. We can help the boy.
Author Roman Betsenko
Photo Denis Zagorsky Tells
a dermatologist in the office of bullous epidermolysis NDSB "Ohmatdet" Inna Vladimirovna Gedeon: “We learned about the boy from doctors more than a year ago. When I first talked to my mother, she cried into the phone and did not believe that someone was interested in them and someone was ready to help them. In boys, dystrophic bullous epidermolysis is a severe form of the disease. Such a child needs constant monitoring by a dermatologist and pediatrician for adequate wound healing, detection and correction of complications. And my mother was so desperate for the lack of help that she almost stopped going to the doctors. In addition to multiple blisters and wounds on the skin (skin damage of about 60%), the child has damage to the mucous membranes, especially the mouth with narrowing of the mouth, multiple erosions and significant damage to teeth, which complicates eating and leads to developmental delays, complete fusion of fingers and legs, so he needs the constant presence of one of the parents. Constant loss of protein and other nutrients through blisters and wounds, bleeding is accompanied by constant polydeficiency anemia, low levels of zinc, vitamin D and Ca in the blood. Such a boy needs adequate skin care in the form of non-stick bandages, wound-healing and antiseptic creams and ointments, constant treatment of oral mucosa, proper care and timely dental treatment, constant intake of zinc, iron and other nutrients, high-calorie therapeutic mixtures with high protein content. under the close supervision of a dermatologist and pediatrician to improve his condition and quality of life. "
The cost of special dressings and medicines 41,322 thousand. UAH
Dear friends! If you decide to help Rustam Tymoshenko, don’t be embarrassed by the price of salvation. Any of your donations will be gratefully accepted. The money can be transferred to the Ukrainian Relief Fund. All the necessary details are in the fund. You can also use the electronic payment system by making a donation from a credit card or electronic cash, including from abroad (details on ufond.ua). Thank you!
Head of the Center "Debra-Ukraine" IOO "Dermatologists-Children" Tatiana Zamorskaya:"It is sad to realize that before the start of our work (before the creation of the Butterfly Children’s Aid Center - Debra Ukraine and the opening of the first specialized medical office in Okhmatdet), there was an absolute vacuum in Ukraine over epidermolysis. Not only were "butterfly children" not provided with adequate medical care on the ground, but it was often inadequate and life-threatening for children. As a result of the use of bandages adhering to the wounds, children were subjected to daily torturous procedures of wound treatment comparable to medieval torture. As a result of doctors prescribing large doses of antibiotics and other serious drugs, according to the protocol, "for reinsurance and discharge from the doctor", in which in most cases there was no need, and already weakened children were brought to such a state of immunity. in which they could no longer fight either bacterial or viral infection or other problems. As a result - early mortality and severe disability, destroyed the fate of entire families.
For comparison, abroad, with adequate treatment and the use of modern bandages - mortality also occurs, but very rarely, with a certain form and type of BE. In most cases, butterfly children in Europe live more or less full lives, study, work, travel, and enjoy life, despite the limitations and problems associated with the disease that cannot be completely eliminated.
The goal of Debra Ukraine is to provide adequate medical care to children and life without pain! To do this, children need special plasters and bandages for wounds to live every day without pain .. These special tools, unfortunately, are not produced in Ukraine, and imported are very expensive. The life of a child with a dystrophic form of BE costs from 60-200 thousand UAH. per month.
Rustam’s family cannot provide the child with everything even the bare minimum. His need for medicine far exceeds what his family has now and what we as a patient organization help. Therefore, we ask everyone who can help raise funds to help Rustam. "
Responded (took the details): 193 people Helped
: 193 people
Collected: 41 322 UAH
Rustam is fourteen years old. He was born with damaged skin, his whole body was like one solid wound. The boy has a severe form of bullous epidermolysis. It is a genetic disease in which the skin is so vulnerable that any touch damages it, causing severe pain. There is a way to protect the fragile "butterfly". This requires special non-stick plasters, soft bandages and ointments to treat wounds. But they are very expensive.
Rustam is the first and long-awaited child in the Tymoshenko family. From birth, he lives with an extremely complex and, unfortunately, incurable genetic disease: a dystrophic form of bullous epidermolysis. The boy’s whole body was covered with painful wounds, fingers and toes fused together, his tongue half growing to the sky. Young parents were shocked by the diagnosis of their newborn son. They didn’t even know if Rustam would survive.
- When I talked to the first doctor Rustam, who diagnosed, she replied: "If such children live to two years, then they will continue to live." But no one gave us any guarantees for life, because the child was very "heavy", - says Ludmila, the boy’s mother.
For the first three months of his life, Rustam was treated, and then doctors released him home, advising his parents to lubricate the wounds with bruises in an aqueous solution and bandage them. But the usual bandages dried on the skin and for a new bandage, they had to be soaked and carefully removed. His extremely sensitive skin could not be injured. This went on for several years.
- We live in a small town, no one has ever heard of such children here, and even more so about their treatment. And for a while it seemed to me that Rustam was the only one in the whole world, - says Lyudmila. - Once I approached my husband and asked: "Why our son and we are so punished?" And he replied: "This is not a punishment, this is a test. We have no choice, we have to cope. We can handle it. " And after that I came to terms with what happened.
It soon became clear that Rustam was not alone in the world. Information about bullous epidermolysis, an unknown disease with a complex name, was collected piecemeal until we learned about the first in Ukraine specialized medical office for patients with bullous epidermolysis - "butterfly children". Medical institution opened on the initiative of the International Public Organization "Dermatologists - Children", the Center "Debra-Ukraine" and with the support of NDSB "Okhmatdet". It is here that Rustam receives the necessary professional medical care, and Ludmila, at any time can get qualified advice, as well as communicate with other families with "butterfly children".
Now the boy is fourteen and only recently, the family began to use special bandages that do not stick to wounds smeared with healing ointments. They are not produced in Ukraine, and parents are forced to buy imported wound care products, which are very expensive. It takes about four hours a day to treat wounds and bandage Rustam. The procedure is painful, difficult, the boy often screams. If you do not bandage your fingers, they will begin to coalesce. If the wounds are not treated, they will fester and bleed.
- He knows what pain is, and he knows it from childhood, - says Lyudmila, once again, bandaging Rustam’s hands.
Tymoshenko’s family spends more than 20,000 hryvnias a month on Rustam’s treatment, and this is the minimum, as the complexity of the disease requires large funds for treatment. In addition, twice a year he needs to go to the hospital and at least once a year go to the sanatorium. There is simply not enough money for everything. In addition, Rustam still has a younger sister, whom parents also need to raise and put on their feet.
Rustam loves his younger sister Masha very much, as she loves him. They spend a lot of time together, sometimes riding bicycles together, it is important that all games were calm and not traumatic, because the slightest carelessness, and new wounds appear on the boy’s body, and with them a new pain.
Rustam is a very smart boy. From first to seventh grade he graduated with honors. Like any child, he has a dream, he wants to become a programmer and is already taking the first steps towards a dream - he has created several test websites.
- Last year, an exhibition of motorcycles was brought to our city, I really wanted to get there, but there was no money to pay for the entrance. Rustam saw that I was upset, took my hand and led me to the exhibition. And on the way, he said that he earned UAH 950 by selling the site, that he wanted to pay for the entrance to the exhibition, just to make me smile. We stopped and I cried.
Special wipes and non-stick plasters, soft bandages, ointments and vitamins can make the boy’s life so difficult. Only all these bandages and medicines are very expensive. And others cannot be used. Rustam’s parents do not have such money. We can help the boy.
Author Roman Betsenko
Photo Denis Zagorsky Tells
a dermatologist in the office of bullous epidermolysis NDSB "Ohmatdet" Inna Vladimirovna Gedeon: “We learned about the boy from doctors more than a year ago. When I first talked to my mother, she cried into the phone and did not believe that someone was interested in them and someone was ready to help them. In boys, dystrophic bullous epidermolysis is a severe form of the disease. Such a child needs constant monitoring by a dermatologist and pediatrician for adequate wound healing, detection and correction of complications. And my mother was so desperate for the lack of help that she almost stopped going to the doctors. In addition to multiple blisters and wounds on the skin (skin damage of about 60%), the child has damage to the mucous membranes, especially the mouth with narrowing of the mouth, multiple erosions and significant damage to teeth, which complicates eating and leads to developmental delays, complete fusion of fingers and legs, so he needs the constant presence of one of the parents. Constant loss of protein and other nutrients through blisters and wounds, bleeding is accompanied by constant polydeficiency anemia, low levels of zinc, vitamin D and Ca in the blood. Such a boy needs adequate skin care in the form of non-stick bandages, wound-healing and antiseptic creams and ointments, constant treatment of oral mucosa, proper care and timely dental treatment, constant intake of zinc, iron and other nutrients, high-calorie therapeutic mixtures with high protein content. under the close supervision of a dermatologist and pediatrician to improve his condition and quality of life. "
The cost of special dressings and medicines 41,322 thousand. UAH
Dear friends! If you decide to help Rustam Tymoshenko, don’t be embarrassed by the price of salvation. Any of your donations will be gratefully accepted. The money can be transferred to the Ukrainian Relief Fund. All the necessary details are in the fund. You can also use the electronic payment system by making a donation from a credit card or electronic cash, including from abroad (details on ufond.ua). Thank you!
Head of the Center "Debra-Ukraine" IOO "Dermatologists-Children" Tatiana Zamorskaya:"It is sad to realize that before the start of our work (before the creation of the Butterfly Children’s Aid Center - Debra Ukraine and the opening of the first specialized medical office in Okhmatdet), there was an absolute vacuum in Ukraine over epidermolysis. Not only were "butterfly children" not provided with adequate medical care on the ground, but it was often inadequate and life-threatening for children. As a result of the use of bandages adhering to the wounds, children were subjected to daily torturous procedures of wound treatment comparable to medieval torture. As a result of doctors prescribing large doses of antibiotics and other serious drugs, according to the protocol, "for reinsurance and discharge from the doctor", in which in most cases there was no need, and already weakened children were brought to such a state of immunity. in which they could no longer fight either bacterial or viral infection or other problems. As a result - early mortality and severe disability, destroyed the fate of entire families.
For comparison, abroad, with adequate treatment and the use of modern bandages - mortality also occurs, but very rarely, with a certain form and type of BE. In most cases, butterfly children in Europe live more or less full lives, study, work, travel, and enjoy life, despite the limitations and problems associated with the disease that cannot be completely eliminated.
The goal of Debra Ukraine is to provide adequate medical care to children and life without pain! To do this, children need special plasters and bandages for wounds to live every day without pain .. These special tools, unfortunately, are not produced in Ukraine, and imported are very expensive. The life of a child with a dystrophic form of BE costs from 60-200 thousand UAH. per month.
Rustam’s family cannot provide the child with everything even the bare minimum. His need for medicine far exceeds what his family has now and what we as a patient organization help. Therefore, we ask everyone who can help raise funds to help Rustam. "
Responded (took the details): 193 people Helped
: 193 people
Collected: 41 322 UAH