Ardeshir was proud to have a son. Then, at age two he was diagnosed with SMA, a genetic debilitating muscular disease. Now his son cannot move his legs anymore and his arms are getting weaker. After 8 years Ardeshir gave up hope that there was help in Iran. He heard about a new medicine in Germany. He left on a quest to save his son.
Ardeshir has worked since he was 10 years old.
I am a bad father if I do not help him!
I meet Ardeshir as he talks with his family on "Telegram' an Iranian video chat. I then get to know his reason for leaving Iran, very different from others here. He has heard of a new medicine, but does not know names, cities, clinics or doctors. He speaks no English, and is stuck on Lesvos where he can neither work to feed his family nor find the medicine he is looking for. I had never heard of 'SMA' but was confident I could help him. - Well, we both would learn that I could not.
Ardeshir has met and overcome many hurdles in his life. And he is adamant that he will be able to help his son.
He tells me about his life and shows me his interview transcript to help the translation:
He lived with his 7 siblings in a small city in Iran.
When his father died, Ardeshir was 10 years old. As the eldest of 8 he had to leave school and provide for the family.
He became a car mechanic and has worked fixing cars and trucks for the past 23 years. They moved to Ardebil in the north of Iran where he married at 19. They first had a daughter, later a son. Ever since the son was diagnosed with SMA Ardeshir fought for his treatment, most of it paid privately, a great burden - but without success. When he heard of a new medicine in Germany that was not available in Iran, he decided to just go there to get it, or get his son there.
He crossed into Turkey with the help of smugglers. He spent another 4 days in a car to Istanbul. There he met a smuggler who promised him a German passport. He called his family to borrow money and send 5,000 (? amount not clear) Euros. After 10 days he found out it would not work, and the smuggler had disappeared. Without food and money he spent 2 weeks in the bus station, eating leftovers from restaurants and earning money for the bus to Izmir. There smugglers overcharged him with 1,200 Euros for the crossing, but it worked on first try. That was 40 days ago and he had his interview 2 weeks ago.
Since he did not know where to turn in Germany, I tried to find out where he could get access to the cure. After many emails to German doctors and his Iranian doctor Aryani I learnt that there is no cure. He misunderstood. This is a genetic disease.
The only new and experimental treatment available is for early diagnosis at age 1 or 2. It may delay but not cure the course of SMA. It is extremely expensive with serious side-effects.
Without insurance the treatment cost of several 100,000 Euro a year is insurmountable. It involves a lengthy initial hospital stay and annual follow-up treatments in a specialized pediatric clinic.
I tried to bring the hard news to Ardeshir but he does not understand the nature of a genetic disease and the cost. He says, he'll work all his life to pay for it. I try to look for a clinical trial world-wide but only find one in Holland for 2-year olds. These emails go back and forth for 2 weeks. Friends help translate but communication is difficult. As is communication about his asylum case.
I find a volunteer lawyer and a translator. When she makes the situation clear to Ardeshir, he has a break-down but hopes to get a work permit and get his family to join him against all odds. I suggest we could organize a fund-raiser or apply for other type of relief, like a wheel chair. Others carefully suggest that his family may need him at home. But Ardeshir has invested too much money, too many of his hopes, and his self-esteem as a father to dare to return empty-handed. He'd rather die trying he says.
Update 2018: Ardeshir told me via facebook that he has asylum and lives in Athens. But he cannot find work without speaking the language. He tries but finds learning Greek extremely hard.