Filed under: A New Reality, General, Movies, Profiles
Israel was 39 pounds lighter and alot sadder this week, with the passing of Ami Ankilewitz.
The subject of the award-winning documentary ’39 Pounds of Love’, Ankilewitz was born 41 years ago with Spinal Muscular Atrophy an extremely rare and often fatal condition that limits physical growth and movement.
After defying doctors predictions that he would only live for six years, Ankilewitz succumbed to the disease over the weekend and was buried on Sunday, the second day of Rosh Hashana.
Due to the disease, Ami never weighed more than 39 pounds (17.7 kg.) as an adult and was virtually paralyzed, having the use of only one finger. However, he lived life like he was long distance racer, which prompted Israeli filmmaker Dani Menkin in 2005 to chronicle Ami’s life.
Menkin first saw Ami in a Tel Aviv bar, and was instantly drawn to him and thus, began a relationship that would eventually lead to making the film.
39 Pounds of Love centers on Ankilewitz’s quest across America to make peace with his brother and confront the doctor who predicted his early death. Along the way, he visits the Grand Canyon and rode a Harley-Davidson motorcycle, one of his life’s dreams and passions.
In the film notes, Menkin recalled, “Ami told me that during his first year, the doctor predicted he would not survive past the age of 6. Now he was 33. He was ready to tell his story and I wanted to know more about him. We just started shooting Ami and his everyday life. I was amazed by the fact that a guy like him not only didn’t feel sorry for himself, but lived his life to the fullest. He wanted to go cross country in the US as a way to feel more alive. What amazed me even more is that Ami was a brilliant 3D animator who makes beautiful artwork, using just one finger. When he showed me his work I thought it would be incredible to include Ami’s Animation in the film as a way to express his feelings and desires. Thru the animation he could express himself and leaving the physical limitations aside.”
The film won the Best Documentary category at the Ophir Awards given out by
the Israeli Academy of Film, and was screened extensively in the United States to critical praise.
“I think a person like me would have much more motivation… for the simple
reason that it would be much more important for me to prove that I could be
as efficient as everyone else,” Ankilewitz wrote on his Web site.
“It could have been worse. I could have been ‘normal.’ I have the freedom to be whoever I want. I do not think people should look at me as a hero. Instead, they should think of themselves and put themselves in my position and think what other options do I have. It’s
either live or die, and I chose not to die.”
Ami’s friends and family were due to gather on Tuesday night in Tel Aviv for a public screening of the film and to celebrate his extraordinary life.