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Anas Abed's Fundraiser:

Save toleen's life!

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Anas Abed


‏We got married in 2002 and had our two kids, Rayan in 2003 and Toleen in 2006. Both Rayan and Toleen were very healthy, until Rayan was 4 years old. He started getting sick. He started having cramps in which we couldn’t explain. Doctors had a different diagnosis for Rayan every time we visited the hospital. The only thing that was done on regular basis was the Intravenous fluids and blood he got, and then we were always sent home. Nobody expected he had a genetic disease. Toleen was only two years old and I used to leave her with her aunts and relatives, in order for me to be able to take care of Rayan. He was unable to walk and had fluids coming out of his mouth and nose. I still remember the night he crawled to my bed at night to wake me up and tell me that he couldn’t breathe. We rushed to the hospital, he was crying with agony, and none of us nor the doctors knew what was wrong with him. He was shouting while the Intravenous fluids were attached to his body. After he got the fluids, we took him home, but he had more severe cramps, and he lost the ability to concentrate his vision and see. We head to the ER, they told us that he was just pretending. Despite the fact that he ripped my clothes while holding him out of agony. A nurse noticed that his tummy’s size was not normal, and asked us to have his tummy scanned. They had his tummy scanned and found out that he had a complete kidney failure, his kidneys had already melted. They had him checked into the ICU immediately, where the percentage of Urea (poison) was 500 in his body. The doctors said that he should have been dead. He was so cramped and shouting that they had to attach the tubes to his body without anesthesia. When the doctor came and confirmed that Rayan had a complete kidney failure, we didn’t know what it meant. We have heard of it before for sure, but had no idea what it’s like. We thought that all of this will end up soon with a kidney transplant surgery. But, Rayan went in a coma for 12 days. While he was in coma, the doctors finally diagnosed him with Primary Hyperoxaluria. They asked for an immediate checkup for Tuleen. We found that Toleen has it too. We started treatment with Toleen and kidney dialysis with Rayan. We started to understand what the disease is. We realized that the treatment would be a kidney and liver transplant surgery at once. We knew that a kidney transplant would not work because it will fail again and over and over. We had to put both of them on a strict diet against the types of food that affect the kidney and the liver, to the point that we reached days where we had no idea what to feed them. Rayan started going to school, and he had his regular dialysis at home. He had days where he was very tired, but the school was very cooperative and helped with his medicine. He was always cold even in the summer, and the school had a special heater turned on for him all the time. Until one day, when they called and asked me to go pick Rayan because it was too much for him and them to handle. I was crying on my way to school, I felt that it was unfair to Rayan, because even his right to go to school was taken from him. We traveled to Egypt, hoping to do the surgery for Rayan, but we were unlucky because his blood type wasn’t available and we had no donor with a first family relation. We had dialysis for Rayan among four years, and he started needing blood as well. He reached a point where he couldn’t even play with his toys. He tried his best not to show us that he was in pain and was very funny, the whole family loved him to the utmost. There was a time when he couldn’t move his nick, and I used to check on him every night to make sure that he was still breathing. His chest curved and prevented him from breathing. Our regular day was with dialysis for Rayan in the evening and Dialysis for Toleen in the Morning. We stopped preventing food from Rayan, we didn’t want that to be taken away from him as well. He collapsed and we checked into the hospital, doctors wanted to put him to sleep, but then decided to keep him awake. He asked me to bring him his favorite meal. He ate only a little, then cramped, his heart stopped, they recovered him back, but it didn’t take long before his heart stopped again and he died! We wish he was still alive, even with dialysis. Toleen has the same blood type as her mom and She did the test and matched a 75% to be her donor. We have overcome the problem of the donor but faced another problem. The kind of surgery that Toleen needs cannot be done in Jordan, not even in the best hospitals. Because it requires transplanting a liver and a kidney in one surgery. We communicated with a lot of hospitals in the region and abroad, and found out that the surgery can be done in a hospital in Jerusalem. We were shocked to know that it costs 300K dollars which is 210 Jordanian Dinars approximately. We are not poor nor beggars, but the fact that we need 300K dollars for the surgery is above us and our entire family. We are counting the days, watching Toleen getting worse just like Rayan did, and we can do nothing. We believe that Humans are the most valuable thing we have here in Jordan, help us to save Toleen, and don’t let us lose Toleen.



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