Helping doesn’t depend on the number of help wanted

Henoch-Schonlein Purpura (HSP) is kind of rare disease which is less identified and unfortunately, it is not supported by any organizations as it is an orphan disease. Purpura can affect anyone. But it’s most common in children especially boys between4 to 12. HSP is a disorder that causes inflammation and bleeding in the small blood vessels in skin, joints, intestines and kidneys. The most striking feature of HSP is a purplish rash, typically on the lower legs and buttocks. Purpura can also cause abdominal pain and aching joints. Rarely serious kidney damage can occur. There is a boy, his name is Abolfazl Jafari, he is 11 years old and he lives in Sari. He has affected by this disease since he was 7 years old. His mother says: ” one night he had a high fever, he faced bloody urine and vomited blood regularly.” His disease is still not known with certainty and his family still doing tests to determine the status of their child’s condition and they bear a million costs. His father was a truck driver and paid a lot of money for his treatment and he sold his truck, to pay the cost of treatment. Abolfazl father during the last 3 years has paid 13 million Toman for the trial of his son. Every time they come to Tehran because of their child, they spend the whole night at the mosque in the hospital. His father says: “My son was educating at primary school but because he is weak and sometimes he faints, vomits and they had to send him to the hospital regularly, he stopped going to school.” Abolfazl mother and father say: ” We asked for financial support from the Ministry of Health, the Health Ministry said in response: “We support the families of patients who are handicapped, and Your child has still not been disabled!” also Mr. Yousefnezhad the representative of Sari at each visit says he will follow the case, but any small incident occurred. Relief Committee says they can not support us since we are not orphans. Right now only Mr. Davoudian General Manager of Rare Diseases Foundation of Iran and Mrs. Rafe head of Red Crescent volunteers to support us financially. I utmost appreciate Dr. Araiaie, Prof. Aghighi, Dr. Ghafari and Dr. Hooshmand because they always support my son in different ways. Fortunately, doctors help and never ask me to pay for examinations and we just pay for delivering the blood tests to Germany. The center for supporting specific diseases told us they only support patients with specific diseases and because your child’s disease is not registered as specific and it is kind of rare one we are not allowed to support you. “Indeed, if we are going to help anyone, it should be inclusive.” Is it pleasant? It’s better we help the small number of patients instead of waiting for them to increase, just that time we can feel proud.