Joyce is a joyful teenager and a brave patient with a very rare and annoying disease. Thérèse, the girl’s mom, is a kindergarten teacher. She has no husband. The two of them only have each other. When Joyce was several months old, her body gave the first signal that something was wrong. Her joints became swollen and she suffered from acute pain. At the hospital, it turned out she suffered from a rare incurable disease.
Sickle cell anemia is a nasty disease – an organic defect in hemoglobin structure. Not everyone has seen erythrocytes with their own eyes – to put it simply, they should be round particles that move along the blood circulation system without any difficulty. Joyce’s erythrocytes have a rigid, sickle-like shape, they move slowly and they fall apart often. This defect in their structure results in bone and joint pain attacks. These are caused by low temperature or heat waves. The body may respond to very dry conditions and to continuous rain, to stress and tiredness – in a word, the bomb usually explodes when it is least expected, and it is difficult to counteract the effects.
The only way to live with sickle cell disease is symptomatic treatment. Joyce should always have access to antibiotics and pain-killers. A blood transfusion would bring much better results – but there is no chance for it in Togo. The best possible solution would be bone marrow transplant.
We want to do everything to make sure that Joyce, who is talented and loves school more than anything else, doesn’t have to discontinue education. We want her mom to have constant access to injections and pain-killers. Every attack of her daughter, which makes it necessary to buy medications and visit the hospital, costs Thérèse about 20 000 francs, that is, a little more than 100 PLN. The girl suffers from attacks two, sometimes even three times a month. As the single mother’s salary is 45 000 francs, the disease is ruining the household budget just as much as the 11-year-old’s body.
What can we do?
We have looked through Joyce’s medical documentation. She is missing some vaccinations, which should be supplemented urgently. There is power supply and a refrigerator at home, so the necessary supply of drugs can be kept there easily. We want to buy these drugs and make sure they are always there. We can also send the girl to the best specialists in Togo, cover all treatment costs and prevent a situation, in which her mother would have to make the toughest of all choices: whether to treat or feed her daughter, let her study or relieve her pain.