'39 Pounds of Love' star dies at 41

39 Pounds of Love star

Ami Ankilewitz, the subject of an award-winning documentary who braved a debilitating illness for 41 years, finally succumbed to it on Sunday. Ankilewitz was born with Spinal Muscular Atrophy - an extremely rare and often fatal condition that limits physical growth and movement. Despite a prediction from a doctor that he would live for only six years, Ankilewitz continued to survive and succeed. Due to his medical condition, he weighed only 39 pounds (17.7 kg.) as an adult and had use of only one finger during his life. In 2005, Dani Menkin directed the documentary about Ankilewitz titled 39 Pounds of Love. The documentary 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. The film won the Best Documentary category at the Ophir Awards given out by the Israeli Academy of Film, and at the Palm Beach International Film Festival. It was also screened in the United States to critical praise. Ankilewitz continuously strived to live an active, normal lifestyle despite his immobility. In recent years, he drove an Alfa Spider convertible, became an outstanding handgun target shooter and even tried to join the IDF. He enjoyed going to bars and clubs, travelling and having "the time of his life" with his friends. "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 personal Web site. With his index finger, he was also an avid 3D animator, creating computer animation to tell his personal stories of love. And it was love that was at the center of Ankilewitz's life. "For me it [love] is more than just a word. It is the essence of our existence," he once said. Throughout his life, Ankilewitz viewed his disability as an advantage. "I'm lucky that I am what I am," he said. "I rephrase to myself as a 'what' for the simple reason that science hasn't yet found a definition for me that would be suitable in my mind. 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." In remembrance of his life, 39 Pounds of Love was shown in Tel Aviv on Tuesday night. His funeral was held at Kibbutz Givat Hashlosha, east of Petah Tikva, on Sunday night.