Aharon is 10 years old. He loves to read and all the subjects that he studies in school are fun and interesting. Aharon is in a rush; he wants to see and learn everything. He lives in Kamo’s Hatsarot village. Currently, he lives with his grandmother in Yerevan in the home of one of his relatives and will receive help from doctors.
Aharon’s grandmother says that a couple of days ago, Aharon came home and said in a crying tone: “I don’t to go to school”. His parents were shocked because the boy loved going to school. After convincing him for a long time, Aharon finally decided to share his story with his parents. He said that his classmates made fun of him and said “Look at him, look at the way he walks. He can’t walk, he looks like a handicapped.” Aharon got deeply offended and, although he loves to go to school, he is ashamed of his classmates. He does his best to not leave the impression of a “handicapped”, he tries to walk normally just like his classmates, but he can’t withstand the pain he feels, the pain takes control, he crouches and becomes small. Aharon’s parents noticed that their son was walking crooked at the age of four. They took him to a doctor in Hatsarot because they thought that it was from his pancreas, so the doctor removed his pancreas; but the situation got worse after that. Since the parents are very poor and did not have any means, they did not pay attention to the child’s health. They thought that it would pass with age. Aharon got worse as he got older. “His feet get weak from walking, he crouches and falls down,” says Aharon’s grandmother Varditer. Mrs. Varditer says that the child is getting worse each day. His mother takes him to school holding his hand, sits him in his chair in the classroom so that he won’t fall down. Aharon’s body is becoming unpredictable, his feet are getting weaker, falls on the floor and the child cries from fear and disability. “Yesterday, we were in the elevator, holding hands, going down to see the doctor. My son’s feet folded in the elevator, he fell on the floor and cried from fear. I can’t bear to watch my son fall apart. I get heartfelt and I can’t take it,” says Grandmother Varditer as she tries not to cry. His parents have finally decided to take him to the doctor for a check up, whatever it may cost. They will ask for the money or get a loan. Aharon’s father took him to a doctor. Grandmother Varditer says that that day he returned home and said nothing at all. “I don’t know what they said to him, but he looked hurt. He is very sad; he doesn’t open his mouth to talk. He couldn’t bring the kid to Yerevan and he told me that. That is why I brought him.”
Head of the neurology department of the #3 children’s hospital Laura Gurgenovna got heartfelt after checking up on Aharon and gave the diagnosis by fighting back her tears. She told about the sickness to Mrs. Gohar, who is a friend of Aharon’s family and who had been invited by Mrs. Varditer. Mrs. Gohar took care of the grandmother and thought that she wouldn’t stand the pain since she is an old woman. The doctor discovered a rare disease in the child’s body-myalgia. During myalgia, a person’s muscles decay and children are the ones that mainly suffer from this disease. Myalgia makes the person worn out, the muscles get thin and muscle cells slowly die. The doctor explained that the child is dying slowly yet surely. The sickness can’t be cured…Mrs. Gohar says: “When I went to the hospital, Aharon got so happy; I couldn’t imagine that my visit could have made him so happy. He probably felt all alone. He had lived through loneliness and had gotten afraid. We were holding hands and coming home. He sensed that I was very sad and that I could not speak. He looked at me and said: “Won’t I get better?” What could I say to the kid?” Mrs. Gohar says that she noticed that Aharon turned violent and capricious when they got home. She says: “As long as he is in our home, I want to prepare the food that he likes. When he goes home, his parents can’t feed him well since they are poor. He doesn’t eat anything. He has turned into a nervous wreck. He doesn’t express himself, yet he understands that the doctors can’t help him. The doctor said that if Aharon gets a cold and stays in bed, he will not be able to get up anymore. He said that he must be fed well so that he won’t get a cold; otherwise, he will die. Good nutrition and warmth will keep him alive for a while, but the child will continue to slowly die. According to the doctor, the end is near for Aharon.”
Grandmother Varditer says that there is nobody in their family that suffers from this disease. “My son Martin is a second degree handicapped. A bomb exploded under his feet in 1993. The sole of one of his feet was completely damaged. They did an operation, but he doesn’t have a sole. He is handicapped.” After the event, Martin got married and had two kids-Aharon and his 4 year old sister. Martin’s foot still hurts and he can’t stand the pain. “He cries in pain, drinks vodka so that he won’t feel it. When he drinks vodka, he starts fights and beats his wife. People in Kyavar sow potato seeds, but he can’t even do that. He doesn’t have a home. He lives on rent-in the cold and hungry. The family lives on a 30,000 dram pension…” says Aharon’s grandmother. “How will we able to keep the kid alive?’
Aharon misses his sister after a couple of days in Yerevan. Yesterday, he secretly called his neighbor in Kyavar in Mrs. Gohar’s room and asked for his mother and sister to the phone. He talked with them and he was alleviated a little. Although he can’t stand it in the house, he can’t stand the doctors at the hospital when they whisper to each other either. Aharon wants to go back home…