Help Yuri Fight Thalassemia Major
Donation protected
Help Yuri Live
Yuri was born on August 3rd, 2008 in Paramaribo, Suriname. At the time of his birth, he wasn't tested for Thalassemia, a procedure now standardized in the country.
As Yuri grew, his mother noticed he wasn't eating properly and wondered if this was a child who was just a picky eater or was there something else wrong. He was often experiencing nausea and dizziness, and was pale. One day, his symptoms were so severe that he was taken to the hospital, and after blood tests were run, his Thalassemia came to light. It was also determined at that time that he had Beta Thalassemia Major , the more severe form of the disease.
Since then, Yuri has been getting monthly blood transfusions. With so many transfusions, there was a large amount of iron build-up in his system. To relieve his body from this, they started chelation therapy which is a very painful procedure and one that takes place at least 3 times a week. Because of this, he misses a great deal of school and is unable participate in many daily activities that most of us are able to participate in without difficulty.
A temporary and painless solution for him would be to start oral chelation. This would be done by using ExJade Defarisox which is a very expensive medication. The cost is approximately €26,71 per pill. In Suriname where Yuri lives, they don’t have this medication and he therefore needs to obtain these pills in the Netherlands.
Because he is not a Dutch citizen, nor does he have a resident card with a personal Dutch identification number, he can’t be insured in the Netherlands for the costs to be covered.
His insurance in Suriname doesn’t cover the medication and it is currently unavailable in the country.
As already stated, a temporary solution for Yuri would be the Chelation medication. A more permanent treatment for him would be to receive a bone marrow transplant. This procedure is not available in Suriname and Yuri would have to go overseas.
Without chelation therapy and/or a bone marrow transplant, the mortality rate from this chronic condition is very high and Yuri’s chances of survival are very slim. Without a bone marrow transplant, Yuri will forever need to be treated with blood transfusions and chelation therapy but eventually the iron overload in his system will cause organ damage which will result in organ failure. Children who have Beta Thalassemia Major who don’t get the proper treatment die young.
As Yuri awaits any potential treatment for a bone marrow transplant, the chelation pills are needed. This medication would allow him to at least go to school and go through chelation therapy without the trauma of multiple blood transfusions.
As we know, going overseas for medical treatment is very expensive. The pills are also very expensive. As to how many pills are needed, depends on how quickly he can receive a bone marrow transplant.
Unfortunately the family doesn’t have the finances to pay for the medication or the medical expenses of a bone marrow transplant and that’s why your help is needed. Any donation is appreciated in any amount and, through your donation, please help us attain our goal in assisting Yuri’s family to help pay for Yuri’s medication, and, eventually, a permanent treatment through bone marrow transplant so that he can have the childhood and good health he is entitled to and deserves.
Yuri was born on August 3rd, 2008 in Paramaribo, Suriname. At the time of his birth, he wasn't tested for Thalassemia, a procedure now standardized in the country.
As Yuri grew, his mother noticed he wasn't eating properly and wondered if this was a child who was just a picky eater or was there something else wrong. He was often experiencing nausea and dizziness, and was pale. One day, his symptoms were so severe that he was taken to the hospital, and after blood tests were run, his Thalassemia came to light. It was also determined at that time that he had Beta Thalassemia Major , the more severe form of the disease.
Since then, Yuri has been getting monthly blood transfusions. With so many transfusions, there was a large amount of iron build-up in his system. To relieve his body from this, they started chelation therapy which is a very painful procedure and one that takes place at least 3 times a week. Because of this, he misses a great deal of school and is unable participate in many daily activities that most of us are able to participate in without difficulty.
A temporary and painless solution for him would be to start oral chelation. This would be done by using ExJade Defarisox which is a very expensive medication. The cost is approximately €26,71 per pill. In Suriname where Yuri lives, they don’t have this medication and he therefore needs to obtain these pills in the Netherlands.
Because he is not a Dutch citizen, nor does he have a resident card with a personal Dutch identification number, he can’t be insured in the Netherlands for the costs to be covered.
His insurance in Suriname doesn’t cover the medication and it is currently unavailable in the country.
As already stated, a temporary solution for Yuri would be the Chelation medication. A more permanent treatment for him would be to receive a bone marrow transplant. This procedure is not available in Suriname and Yuri would have to go overseas.
Without chelation therapy and/or a bone marrow transplant, the mortality rate from this chronic condition is very high and Yuri’s chances of survival are very slim. Without a bone marrow transplant, Yuri will forever need to be treated with blood transfusions and chelation therapy but eventually the iron overload in his system will cause organ damage which will result in organ failure. Children who have Beta Thalassemia Major who don’t get the proper treatment die young.
As Yuri awaits any potential treatment for a bone marrow transplant, the chelation pills are needed. This medication would allow him to at least go to school and go through chelation therapy without the trauma of multiple blood transfusions.
As we know, going overseas for medical treatment is very expensive. The pills are also very expensive. As to how many pills are needed, depends on how quickly he can receive a bone marrow transplant.
Unfortunately the family doesn’t have the finances to pay for the medication or the medical expenses of a bone marrow transplant and that’s why your help is needed. Any donation is appreciated in any amount and, through your donation, please help us attain our goal in assisting Yuri’s family to help pay for Yuri’s medication, and, eventually, a permanent treatment through bone marrow transplant so that he can have the childhood and good health he is entitled to and deserves.
Organizer
Yuri Kasanredjo
Organizer
Maassluis, NL
