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We need the most expensive drug in the world in order to save our son’s life. There is no alternative. aHUS is killing Przemek, ruling our daily routine and leaving no room for joy in our family. He’s got extremely rare and severe type of hemolytic uremic syndrome. Few relapses per year, each of them life-threatening. Doctors have managed to snatch him from the jaws of death couple of times already. We have been living in constant fear whether he is going to get through it next time it comes. The disease has already attacked his kidneys and it’s only a matter of time when other organs get affected as well causing his inevitable death! Soliris is the only hope for our child. The value of his life has been specified. Please help us pay this price.
He had been sound in his first 8 months and then it all started. Sudden fever, vomiting and pain. We had to drive him to hospital and actually stay there for several months. First blood test confirmed doctor’s suspicions. Our son is really ill and his little organism is being destroyed by something called aHUS. We had no idea how serious it was. We were told that everything will be all right eventually. We were not aware of dialysis ant the fact it’s incurable. We were positive, but paralyzed by fear at the same time. I had that feeling under my skin that the nightmare was just about to begin. Unfortunately, I was not mistaken.
He was admitted to the special department. Everything happened in no time: surgery, platelets application and prayers for the success. A catheter was implanted and he was being dialyzed continuously for weeks. It seemed that things had been getting better and shortly we should have been able to get back to life we had known before until, unfortunately, he caught an infection and his platelets and hemoglobin levels dropped drastically and plasma infusion was necessary. That day our little son stood on the edge of life for the first time…
I heard the cries, but different this time. They were the cries of despair. Afraid that he’s suffering, I ran out for help. Nurses and the doctor came immediately. He’s heart stopped and I was expelled from the room. I saw them fighting for his life. Later on I was told that they almost gave up as the resuscitation was ineffective. His will to live was strong enough to overcome death.
After the incident, he wasn’t able to breathe on his own so we spent several days on intensive care. He had to learn again how to breath and eat. Slowly but steadily he was getting better and we left hospital after 4 months. It was his first birthday.
That was just the beginning of the battle, though. Our last 18 months have been full of fear and pain. aHUS is tough adversary that never gives up. So far, Przemek has had 4 relapses. Chronic Kidney Disease level is now at 4th level. We have just left hospital after 4th relapse. Hypertension is another symptom of aHUS and is causing irreversible damage to Przemek’s heart. We are losing the battle with the disease, it’s just too severe…
Doctors say that our case is extremely hard. His relapses are occurring more often comparing to other patients with aHUS. LDH indicator is maintaining a high level which means the disease is active and won’t step down. Kidney transplantation will most likely be required in the future but in order to be waitlisted, the patient has to undertake Soliris treatment. This condition has to be met first and if the treatment does not start on time, the death sentence on his life will be signed.
Ekulizumab (Soliris) is the only drug that can tame aHUS – the most expensive drug in the world that has no substitutes. Unfortunately, in our home country this life-saving drug is non-refundable. The cost of a dose required for one-year treatment is gigantic and our families will never afford it without a third party help. Therefore, I beg you for donations to give him a chance to live. He has to start treatment as soon as possible to minimize the damage. Please help our little son…