Sam Berns, who suffered from the premature ageing disease called progeria, has passed away in Boston, US, early this month. Sam was diagnosed with progeria at age two. He was lucky that his parents, Dr. Leslie Gordon and Dr. Scott Berns, tried very hard not to lose their son by age 13, the average age of death of a child with this disease. They started research foundation which aims to find drugs for progeria. Their work resulted in a drug called lonafarnib. Although it can’t totally heal the disease yet, it is appeared to ameliorate some effects of it.
Sam might not live for so long, he passed away in his 17, but I think he left us many lessons worth learning. I love his courage and confidence. I love how he focused on what he could do instead of regret of what he was not able to do. He played percussion, he hung out with friends, etc. He reminded us to feel grateful of what we have.
Here are Sam’s philosophy for a life:
1. Be OK with you ultimately can’t do, because there is so much you CAN do.
2. Surround yourself with people you want to be around.
3. Keep moving forward
4. Never miss a party if you can help it. ;D
Thanks, Sam. May you rest in peace. And thanks to Sam’s parents who raised him with love and courage.
People, please make time to watch this video. 🙂
Good news. Two filmmakers have made a documentary film about his life titled ‘Life According to Sam’. It has been nominated in many film festivals.
Q: Were you nervous to share your life with an audience?
A: Before we started filming, I was nervous to share my life with an audience, not because of the concept of me sharing my life with an audience, but because of the fear that it could be shared in a way that would be unreal or untrue…that wouldn’t really reflect what my family and I are all about. But, after seeing the film, the reason why I am so thrilled with it is because it so accurately shows what my family and I are all about.
Oh I really want to watch it. The more people watch, the more people will be inspired.
Maisya 
nangiiiis nontonnya. hiks
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Aku jugaaa.. Inspiring banget, Mbak.
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Tadi, begitu papa tahu ada email dari Icha, papa langsung buka. Setelah papa baca pesan Icha utk menonton video itu, papa langsung klik website tsb. Langsung papa tonton. Dst dst. Papa hanya bergumam, “… inilah good practice dari konsep qona’ah, syukur, dan tawakkal yang kita pelajari selama ini.” Subhanallah, Alhamdulillah, Allahu Akbar.
Lalu papa buka google utk mencari tahu siapa dia. Kemudian papa kembali ke inbox email papa. Baru papa temukan pesan Icha berikutnya; tentang blog Icha ini.
Sampailah papa pada statement ini.
Thanks.
Papa
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Betul sekali, Pa. Makasih sudah berkunjung. 🙂
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