Living with Progeria (02:29)
Building with Legos allows Sam to create his own world. He reflects on roller coasters and why he is making this documentary.
Accelerated Aging (03:23)
Sam is one of 250 known children with progeria. In the fall of 2010, Sam is age 13; the average age of death. His parents, Leslie Gordon and Scott Berns, share their feelings about living with progeria.
Sam in 8th Grade (03:19)
Sam attends John J. Ahern Middle School. His parents discuss his health with school staff. Sam reflects on his mother's work with progeria.
Progeria Research Foundation (04:01)
Sam was diagnosed with progeria at age two. His parents and aunt started the foundation and helped discover the progeria gene in 2002. The team received permission to use Lonafarnib in a clinical trial.
Lonafarnib Clinical Trial Participants (04:00)
Meet Sumaira (age 10), Priya (age 18), Niccolo (age 6), Sammy (age 14), Megan (age 10), and Devin (age 14). Devin suffered back-to-back major strokes at age 6. Parents reflect on learning their children's diagnosis.
No Placebo Trial (04:42)
The 28 children in the Lonafarnib clinical trial received the drug for 2.5 years. The children undergo testing at Boston Children's Hospital three times per year. Gordon explains the trial process.
Abnormal Protein (04:03)
Progeria is a small change in the DNA that affects 1 in 4 million children. Without treatment, the children develop heart disease and die of heart attacks or strokes. Gordon's team's research in progeria carries over into other medical fields.
Progeria Diagnosis (05:20)
Sam was born October 23, 1996; see home movies. His parents discuss knowing something was wrong and finally receiving a diagnosis.
After the Progeria Diagnosis (02:04)
Gordon recalls her need to hear Sam breathe throughout the night. She needed the support of her family and friends.
Clinical Trial Halfway Point (03:02)
The trial has been underway for 15 months. Priya undergoes an annual exam; she feels better but her triglycerides are high. Priya's father shares his hope for the trial.
Children Wait for Help (04:16)
Gordon discovered 17 children with progeria after the trial was full; she reflects on the passage of time. Zoe and her family have to wait until the trial is over. Sam turns 14 in October 2010.
Exposure to Death (01:54)
Sam reflects on all of his friends that passed away. He believes he deals with death in a more structured way than other children his age.
Love is the Driving Force (02:23)
Gordon reflects on being in a position to help children with progeria; she does not get angry. Scott's perspective on life changed after Sam's diagnosis.
Dave Mathews Band (05:04)
Sam attends a concert with his dad and meets band members. They band plays "Kit Kat Jam" for Sam. Scott reflects on the concert experience and Sam's disease.
Hospitalization Week (04:59)
Sam undergoes over 100 tests to complete his final clinical trial visit. He reflects on feelings of isolation.
Wrapping up Sam's Participation in the Trial (02:21)
Sam's least favorite part of the clinical trial is the medical photography; he does not feel like a person.
Is the Drug Having an Affect? (02:48)
The trial finishes after 2.5 years. Gordon and her team spend 17 months preparing the trial results for submission. Sam and his family enjoy sporting events and family activities.
Family Milestones (03:11)
On May 11, 2011, Gordon and her team submit the trial results. Sam graduates 8th grade; he receives several awards.
No Clinical Difference in the Patient Population? (05:07)
Gordon learns that her trial paper was not accepted. They clarify their data and submit it to another journal for review. Sam attends the Foxborough High School marching band tryouts; he receives a trial period using a new harness.
Gordon Refuses to Give Up (03:20)
Gordon's paper is rejected a second time; she submits it to a third journal. In October 2011, Priya dies of a heart attack.
Death of a Child (02:13)
Sam recalls learning Priya died.
Dreams of Being an Inventor (02:03)
Sam builds with Lego and shares his hopes for the future. Sam and his family celebrate his 25th birthday in 2011.
Last Shot at Publication (01:51)
On June 27, 2012, Gordon learns the third journal wants a revision to her submission.
PNAS Publication (05:01)
On April 14, 2012, the third journal accepts Gordon's paper; she shares the good news with her team. On Sept. 25th, the research goes public. Gordon discusses the results with patients and family members.
Sam's Results (04:25)
A team member gives Sam and his family the results from his participation in the clinical trial. The family feels hope.
Sam's Musical Performance (01:59)
Sam participates in the drumline at Foxborough High School.
Sam's New Outlook (01:48)
Sam finds progeria "less of an embodiment" because he understands it better on a genetic level. He reflects on living a happy life.
Epilogue and Credits (01:14)
Gordon's team began a second clinical trial with Lonafarnib and additional drugs; they hope to launch a third trial. Sam turned 16 in 2012 and is a top performer in the marching band; he aspires to be a geneticist. (Credits)
Credits: Life According to Sam (01:35)
Credits: Life According to Sam
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