Zbiorka dla Konrada
The money box was created on the initiative of the Organizer who is responsible for its content.
URGENT: Sentenced to death. (opens a new tab) We save lives Konrad! (opens a new tab)
URGENT: Sentenced to death. (opens a new tab) We save lives Konrad! (opens a new tab)
- Salaries:
Legnica, Lower Silesia - Purpose of raising:
purchase of Soliris - Diagnosis:
Budd-Chiari syndrome, paroxysmal nocturnal hemoglobinuria - starts:
17 June 2016 - Ends:
17 September 2016
Donations: 24015
Mom, I was given a drug death. June 15 Konrad sent to the parents of such SMS. It is a life-saving drug, if it is not got it, he would have died within a month. So why "drug death"? Because Konrad also die if you do not get another dose. And this is not because of money.
The drug Soliris, the only way to save lives Konrad, suffering from a rare blood disease, is one of the most expensive drugs in the world. Life Konrad depended on the decision of the Minister of Health. He refused to refund, thus dooming our child to death - say the grieving parents. In our country defends unborn life. Women are not allowed to do abortions, using the argument that saves a life. And our child that we raise that lives here 20 years, does not sign the document for a refund and tells him to die. This is euthanasia is murder - agitated voice dad Konrad starts to break. The echo of his words remains in memory as a stigma.
This story could happen to anyone of us, including you. Summer 2015. Konrad just passed his high school diploma. He was in the class profile military has long dreamed to go to the army. Kickboxing, taekwondo, kung fu, gym - sport is his life. It is the picture of health. Until, when suddenly starts to hurt his stomach.
When pain persists, Konrad goes to the hospital. 2 weeks of research in Legnica does not bring results. The boy clenches his teeth, but the pain is so strong that he wanted to howl. Transport him to the hospital in Wroclaw, where it passes the next test.
There, it turns out that abdominal pain, which Konrad explained overeating or stress, the Budd-Chiari syndrome, an insidious disease that symptoms developed in the body boyfriend, consuming him from the inside. Despite regular studies in sports doctor could not detect it. There Konrad learns, too, that it can only save the transplant.
It has only 20 years old when instead plans to live there is a vision of death. Instead of independence - care nurses. Instead of the desired military - saturated with the smell of fear hospital. Instead of talking with friends until morning discussions are doctors about whether it will live. It has only 20 years old when every day becomes waiting for a transplant.
Feb. 24 at 1 am the phone rings. It donor. The transplant takes 8 hours thanks to him Konrad gets a second life.In the end, he returns home to his family, his brother and friends. Recovers. He recently passed a driving test, finally sits behind the wheel. It's a happy end - so it seems to him for a month.
By the time he again begins to hurt the stomach.
History repeats itself. Konrad goes to the hospital in Legnica. It is, however, after the transplant, need specialized care. Transport him to the hospital in Szczecin. There goes on the operating table, where doctors opened it and do not believe their own eyes. Blood Konrad same cuts in the veins. When the nurse gets her sample, freezes like jelly before it reaches the laboratory.
Doctors consult the Konrad case with hospitals throughout the country. Then they discover that instead of recurrence of thrombosis is also another disease: paroxysmal nocturnal hemoglobinuria, a rare and dangerous blood disease. It is through her blood run cold as lava, clogging veins and leading to blood clots and death.Konrad is the only person in the world suffering from these two diseases at the same time. It can save only a life-saving drug - Soliris, and then the bone marrow.
I have a chance to live - Konrad burst joy. Then he finds out about the price of the drug, which must take regularly. Initially, it is estimated that the annual cost of treatment is 1.3 million. Then it turns out that this amount is considerable higher. Purchase 4 ampoules of the drug makes the hospital in Szczecin, there is no money for more. Within four weeks thrombosis goes back about 15%. Hospital asks the request of the Ministry of Health for reimbursement of the drug, hoping for a positive decision.
And then comes the refusal. It's a shock. Konrad is to receive the next dose, but it is not. The treatment, which should be continued, is interrupted. Close Konrad try to move heaven and earth. Letter to the National Health Fund - denial. Letter to the Lower Silesian Branch of the National Health Fund in Wrocław - denial. A Konrad goes, his condition drastically worsens, get out of the kidney and liver.
URGENT: Sentenced to death. (opens a new tab) We save lives Konrad! (opens a new tab)
- Salaries:
Legnica, Lower Silesia - Purpose of raising:
purchase of Soliris - Diagnosis:
Budd-Chiari syndrome, paroxysmal nocturnal hemoglobinuria - starts:
17 June 2016 - Ends:
17 September 2016
Donations: 24015
592 183.46 zł (32.03%)
To reach our target: 1 256 756.54 zł
Description only in Polish, click here (opens a new tab) to translate.
Mom, I was given a drug death. June 15 Konrad sent to the parents of such SMS. It is a life-saving drug, if it is not got it, he would have died within a month. So why "drug death"? Because Konrad also die if you do not get another dose. And this is not because of money.
The drug Soliris, the only way to save lives Konrad, suffering from a rare blood disease, is one of the most expensive drugs in the world. Life Konrad depended on the decision of the Minister of Health. He refused to refund, thus dooming our child to death - say the grieving parents. In our country defends unborn life. Women are not allowed to do abortions, using the argument that saves a life. And our child that we raise that lives here 20 years, does not sign the document for a refund and tells him to die. This is euthanasia is murder - agitated voice dad Konrad starts to break. The echo of his words remains in memory as a stigma.
This story could happen to anyone of us, including you. Summer 2015. Konrad just passed his high school diploma. He was in the class profile military has long dreamed to go to the army. Kickboxing, taekwondo, kung fu, gym - sport is his life. It is the picture of health. Until, when suddenly starts to hurt his stomach.
When pain persists, Konrad goes to the hospital. 2 weeks of research in Legnica does not bring results. The boy clenches his teeth, but the pain is so strong that he wanted to howl. Transport him to the hospital in Wroclaw, where it passes the next test.
There, it turns out that abdominal pain, which Konrad explained overeating or stress, the Budd-Chiari syndrome, an insidious disease that symptoms developed in the body boyfriend, consuming him from the inside. Despite regular studies in sports doctor could not detect it. There Konrad learns, too, that it can only save the transplant.
It has only 20 years old when instead plans to live there is a vision of death. Instead of independence - care nurses. Instead of the desired military - saturated with the smell of fear hospital. Instead of talking with friends until morning discussions are doctors about whether it will live. It has only 20 years old when every day becomes waiting for a transplant.
Feb. 24 at 1 am the phone rings. It donor. The transplant takes 8 hours thanks to him Konrad gets a second life.In the end, he returns home to his family, his brother and friends. Recovers. He recently passed a driving test, finally sits behind the wheel. It's a happy end - so it seems to him for a month.
By the time he again begins to hurt the stomach.
History repeats itself. Konrad goes to the hospital in Legnica. It is, however, after the transplant, need specialized care. Transport him to the hospital in Szczecin. There goes on the operating table, where doctors opened it and do not believe their own eyes. Blood Konrad same cuts in the veins. When the nurse gets her sample, freezes like jelly before it reaches the laboratory.
Doctors consult the Konrad case with hospitals throughout the country. Then they discover that instead of recurrence of thrombosis is also another disease: paroxysmal nocturnal hemoglobinuria, a rare and dangerous blood disease. It is through her blood run cold as lava, clogging veins and leading to blood clots and death.Konrad is the only person in the world suffering from these two diseases at the same time. It can save only a life-saving drug - Soliris, and then the bone marrow.
I have a chance to live - Konrad burst joy. Then he finds out about the price of the drug, which must take regularly. Initially, it is estimated that the annual cost of treatment is 1.3 million. Then it turns out that this amount is considerable higher. Purchase 4 ampoules of the drug makes the hospital in Szczecin, there is no money for more. Within four weeks thrombosis goes back about 15%. Hospital asks the request of the Ministry of Health for reimbursement of the drug, hoping for a positive decision.
And then comes the refusal. It's a shock. Konrad is to receive the next dose, but it is not. The treatment, which should be continued, is interrupted. Close Konrad try to move heaven and earth. Letter to the National Health Fund - denial. Letter to the Lower Silesian Branch of the National Health Fund in Wrocław - denial. A Konrad goes, his condition drastically worsens, get out of the kidney and liver.
Stan boyfriend is so bad that the doctors decide to re-enable treatment. With savings help parents and loved ones and strangers manage to buy Conrad some time. Money enough for a month administration. On another it does not. Up to 30 days - so much life give Konrad doctors, if you do not get another dose.
In the European Union the only countries that are not refunded Soliris are Poland and Romania. If my son was born in another country, one that cares about its citizens, to live! - Shouts dad Konrad. We do not know where to get the money, sprzedalibyśmy flat and even went under the bridge, were it not that it is a drop in the sea and we still have a 10-year-old daughter, who has to live somewhere - adds her voice breaking mom. Life Konrad depends on one signature, deciding on drug reimbursement. Unless a miracle happens.
Many times already shown that we can make a miracle. Because they did not happen, we just we make them.
And if we fail again - Konrad die.
[Update 07/07/2016]:
Part of the funds collected for Konrad has already been spent - we bought 2 ampoules of the drug. THANK YOU.It is thanks to you, Konrad continued treatment and is still alive. He was transported to a hospital in Warsaw, where he is under the care of the best professionals.
The drug Konrad still not reimbursed. Talks on this issue are still underway, but when you run and what in general will be the decision - do not know. The last letter of June 20 that all the time the decision to refuse - Fund refuses to finance because the drug "has not been placed in the list of reimbursable drugs. " Another letter requesting a refund issued a Warsaw hospital.
Meanwhile, Konrad still needs our help, and subsequent doses, to live.
The clock is ticking, the days go by, during which we can enjoy the beauty of life. Whether the Konrad will be among us, we depend on the subsequent doses of Soliris. And they depend on us.
All funds accumulated in the money box were transferred
directly to the target fundraiser:
URGENT: Sentenced to death. (opens a new tab) We save lives Konrad! (opens a new tab)
URGENT: Sentenced to death. (opens a new tab) We save lives Konrad! (opens a new tab)
- Salaries:
Legnica, Lower Silesia - Purpose of raising:
purchase of Soliris - Diagnosis:
Budd-Chiari syndrome, paroxysmal nocturnal hemoglobinuria - starts:
17 June 2016 - Ends:
17 September 2016
Donations: 24015
Mom, I was given a drug death. June 15 Konrad sent to the parents of such SMS. It is a life-saving drug, if it is not got it, he would have died within a month. So why "drug death"? Because Konrad also die if you do not get another dose. And this is not because of money.
The drug Soliris, the only way to save lives Konrad, suffering from a rare blood disease, is one of the most expensive drugs in the world. Life Konrad depended on the decision of the Minister of Health. He refused to refund, thus dooming our child to death - say the grieving parents. In our country defends unborn life. Women are not allowed to do abortions, using the argument that saves a life. And our child that we raise that lives here 20 years, does not sign the document for a refund and tells him to die. This is euthanasia is murder - agitated voice dad Konrad starts to break. The echo of his words remains in memory as a stigma.
This story could happen to anyone of us, including you. Summer 2015. Konrad just passed his high school diploma. He was in the class profile military has long dreamed to go to the army. Kickboxing, taekwondo, kung fu, gym - sport is his life. It is the picture of health. Until, when suddenly starts to hurt his stomach.
When pain persists, Konrad goes to the hospital. 2 weeks of research in Legnica does not bring results. The boy clenches his teeth, but the pain is so strong that he wanted to howl. Transport him to the hospital in Wroclaw, where it passes the next test.
There, it turns out that abdominal pain, which Konrad explained overeating or stress, the Budd-Chiari syndrome, an insidious disease that symptoms developed in the body boyfriend, consuming him from the inside. Despite regular studies in sports doctor could not detect it. There Konrad learns, too, that it can only save the transplant.
It has only 20 years old when instead plans to live there is a vision of death. Instead of independence - care nurses. Instead of the desired military - saturated with the smell of fear hospital. Instead of talking with friends until morning discussions are doctors about whether it will live. It has only 20 years old when every day becomes waiting for a transplant.
Feb. 24 at 1 am the phone rings. It donor. The transplant takes 8 hours thanks to him Konrad gets a second life.In the end, he returns home to his family, his brother and friends. Recovers. He recently passed a driving test, finally sits behind the wheel. It's a happy end - so it seems to him for a month.
By the time he again begins to hurt the stomach.
History repeats itself. Konrad goes to the hospital in Legnica. It is, however, after the transplant, need specialized care. Transport him to the hospital in Szczecin. There goes on the operating table, where doctors opened it and do not believe their own eyes. Blood Konrad same cuts in the veins. When the nurse gets her sample, freezes like jelly before it reaches the laboratory.
Doctors consult the Konrad case with hospitals throughout the country. Then they discover that instead of recurrence of thrombosis is also another disease: paroxysmal nocturnal hemoglobinuria, a rare and dangerous blood disease. It is through her blood run cold as lava, clogging veins and leading to blood clots and death.Konrad is the only person in the world suffering from these two diseases at the same time. It can save only a life-saving drug - Soliris, and then the bone marrow.
I have a chance to live - Konrad burst joy. Then he finds out about the price of the drug, which must take regularly. Initially, it is estimated that the annual cost of treatment is 1.3 million. Then it turns out that this amount is considerable higher. Purchase 4 ampoules of the drug makes the hospital in Szczecin, there is no money for more. Within four weeks thrombosis goes back about 15%. Hospital asks the request of the Ministry of Health for reimbursement of the drug, hoping for a positive decision.
And then comes the refusal. It's a shock. Konrad is to receive the next dose, but it is not. The treatment, which should be continued, is interrupted. Close Konrad try to move heaven and earth. Letter to the National Health Fund - denial. Letter to the Lower Silesian Branch of the National Health Fund in Wrocław - denial. A Konrad goes, his condition drastically worsens, get out of the kidney and liver.
URGENT: Sentenced to death. (opens a new tab) We save lives Konrad! (opens a new tab)
- Salaries:
Legnica, Lower Silesia - Purpose of raising:
purchase of Soliris - Diagnosis:
Budd-Chiari syndrome, paroxysmal nocturnal hemoglobinuria - starts:
17 June 2016 - Ends:
17 September 2016
Donations: 24015
592 183.46 zł (32.03%)
To reach our target: 1 256 756.54 zł
Description only in Polish, click here (opens a new tab) to translate.
Mom, I was given a drug death. June 15 Konrad sent to the parents of such SMS. It is a life-saving drug, if it is not got it, he would have died within a month. So why "drug death"? Because Konrad also die if you do not get another dose. And this is not because of money.
The drug Soliris, the only way to save lives Konrad, suffering from a rare blood disease, is one of the most expensive drugs in the world. Life Konrad depended on the decision of the Minister of Health. He refused to refund, thus dooming our child to death - say the grieving parents. In our country defends unborn life. Women are not allowed to do abortions, using the argument that saves a life. And our child that we raise that lives here 20 years, does not sign the document for a refund and tells him to die. This is euthanasia is murder - agitated voice dad Konrad starts to break. The echo of his words remains in memory as a stigma.
This story could happen to anyone of us, including you. Summer 2015. Konrad just passed his high school diploma. He was in the class profile military has long dreamed to go to the army. Kickboxing, taekwondo, kung fu, gym - sport is his life. It is the picture of health. Until, when suddenly starts to hurt his stomach.
When pain persists, Konrad goes to the hospital. 2 weeks of research in Legnica does not bring results. The boy clenches his teeth, but the pain is so strong that he wanted to howl. Transport him to the hospital in Wroclaw, where it passes the next test.
There, it turns out that abdominal pain, which Konrad explained overeating or stress, the Budd-Chiari syndrome, an insidious disease that symptoms developed in the body boyfriend, consuming him from the inside. Despite regular studies in sports doctor could not detect it. There Konrad learns, too, that it can only save the transplant.
It has only 20 years old when instead plans to live there is a vision of death. Instead of independence - care nurses. Instead of the desired military - saturated with the smell of fear hospital. Instead of talking with friends until morning discussions are doctors about whether it will live. It has only 20 years old when every day becomes waiting for a transplant.
Feb. 24 at 1 am the phone rings. It donor. The transplant takes 8 hours thanks to him Konrad gets a second life.In the end, he returns home to his family, his brother and friends. Recovers. He recently passed a driving test, finally sits behind the wheel. It's a happy end - so it seems to him for a month.
By the time he again begins to hurt the stomach.
History repeats itself. Konrad goes to the hospital in Legnica. It is, however, after the transplant, need specialized care. Transport him to the hospital in Szczecin. There goes on the operating table, where doctors opened it and do not believe their own eyes. Blood Konrad same cuts in the veins. When the nurse gets her sample, freezes like jelly before it reaches the laboratory.
Doctors consult the Konrad case with hospitals throughout the country. Then they discover that instead of recurrence of thrombosis is also another disease: paroxysmal nocturnal hemoglobinuria, a rare and dangerous blood disease. It is through her blood run cold as lava, clogging veins and leading to blood clots and death.Konrad is the only person in the world suffering from these two diseases at the same time. It can save only a life-saving drug - Soliris, and then the bone marrow.
I have a chance to live - Konrad burst joy. Then he finds out about the price of the drug, which must take regularly. Initially, it is estimated that the annual cost of treatment is 1.3 million. Then it turns out that this amount is considerable higher. Purchase 4 ampoules of the drug makes the hospital in Szczecin, there is no money for more. Within four weeks thrombosis goes back about 15%. Hospital asks the request of the Ministry of Health for reimbursement of the drug, hoping for a positive decision.
And then comes the refusal. It's a shock. Konrad is to receive the next dose, but it is not. The treatment, which should be continued, is interrupted. Close Konrad try to move heaven and earth. Letter to the National Health Fund - denial. Letter to the Lower Silesian Branch of the National Health Fund in Wrocław - denial. A Konrad goes, his condition drastically worsens, get out of the kidney and liver.
Stan boyfriend is so bad that the doctors decide to re-enable treatment. With savings help parents and loved ones and strangers manage to buy Conrad some time. Money enough for a month administration. On another it does not. Up to 30 days - so much life give Konrad doctors, if you do not get another dose.
In the European Union the only countries that are not refunded Soliris are Poland and Romania. If my son was born in another country, one that cares about its citizens, to live! - Shouts dad Konrad. We do not know where to get the money, sprzedalibyśmy flat and even went under the bridge, were it not that it is a drop in the sea and we still have a 10-year-old daughter, who has to live somewhere - adds her voice breaking mom. Life Konrad depends on one signature, deciding on drug reimbursement. Unless a miracle happens.
Many times already shown that we can make a miracle. Because they did not happen, we just we make them.
And if we fail again - Konrad die.
[Update 07/07/2016]:
Part of the funds collected for Konrad has already been spent - we bought 2 ampoules of the drug. THANK YOU.It is thanks to you, Konrad continued treatment and is still alive. He was transported to a hospital in Warsaw, where he is under the care of the best professionals.
The drug Konrad still not reimbursed. Talks on this issue are still underway, but when you run and what in general will be the decision - do not know. The last letter of June 20 that all the time the decision to refuse - Fund refuses to finance because the drug "has not been placed in the list of reimbursable drugs. " Another letter requesting a refund issued a Warsaw hospital.
Meanwhile, Konrad still needs our help, and subsequent doses, to live.
The clock is ticking, the days go by, during which we can enjoy the beauty of life. Whether the Konrad will be among us, we depend on the subsequent doses of Soliris. And they depend on us.
Donations
GosiaPLN 20Będzie dobrze, uda się:)))
- PLN 50
Dla Konrada aby dostal lek!
