To view the original video, please go to http://www.nichd.nih.gov/newsroom/digital-media/videos/videos-NICHDresearch
| Video/ Graphics | Audio |
|---|---|
| TITLE SLIDE: NIH/Eunice Kennedy Shriver National Institute of Child Health and Human Development logo Research for a Lifetime |
[MUSIC] |
| (Edit/effect) Victoria Costache, a young girl, runs across the floor, which has an electronic xylophone displayed. She is inside The Children’s Inn at NIH. | [MUSIC] |
| (Edit/camera cut) Victoria begins jumping and playing on the electronic xylophone. | Narrator: Victoria Costache plays like a normal 5-year-old, but this wasn’t always the case. When she was 3 years old, she was diagnosed with Niemann-Pick disease type C, or NPC… |
| (Edit/camera cut) Victoria is seated at a table with her mom Mihaela Costache. Victoria is playing with a plastic baby doll. | Narrator: …a rare childhood disease that gradually impairs brain function and movement. |
| Camera view of Mihaela and Victoria. BANNER: Mihaela and Victoria Costache |
Mihaela: All she wanted to do was jump, but she couldn’t jump. Umm. She wanted to run, and she couldn’t run, with her friends. |
| (Edit/zoom effect) Exterior photograph of the NIH Clinical Center. | Narrator: Victoria and her mom Mihaela have been visiting the National Institutes of Health… |
| (Edit/zoom effect) Exterior photograph of the NIH Clinical Center and surrounding buildings on the NIH campus. | Narrator: …or NIH, to participate in a clinical study of a potential NPC treatment. |
| (Edit/camera cut) Camera view of Julia Kain smiling. | Narrator: Julia Kain is 15 years old… |
| (Edit/zoom effect) Photograph of Julia in the NIH Clinical Center. She is seated with monitors attached to her finger and arm. | Narrator: …and has been participating in NPC research since 2011. |
| (Edit/zoom effect) Photograph of Julia in a hospital bed. She cradles a stuffed animal under her hand. | Narrator: Like Victoria, her symptoms began to appear around age 3. |
| Camera view of mom Tonya Kain and Julia. BANNER: Tonya and Julia Kain |
Tonya: As hard as the diagnosis of Niemann-Pick is, it was harder not knowing. |
| (Edit/zoom effect) Photograph of toddler Julia eating an ear of yellow corn. | Tonya: At least once you have a name for it… |
| (Edit/zoom effect) Photograph of toddler Julia sleeping. | Tonya: …you can start digging, you can start finding… |
| (Edit/camera cut) A researcher is labeling test tubes in a laboratory and reaching for various items to prepare for an experiment. | Tonya: …people to help. And you have a direction to, you know, put all your energies. |
| (Edit/camera cut) Gloved hands of the researcher are pipetting fluids from an ice bucket into a test tube. | Narrator: NPC occurs when cells are unable to process… |
| (Edit/zoom effect) Microscopy images of colorful brain tissue are seen in sequence. | Narrator: …cholesterol, causing a buildup that damages neurons in the brain. |
| (Edit/camera cut) Dr. Forbes Porter is in the laboratory, talking to the researcher who was shown previously. | Narrator: Dr. Forbes Porter, a senior investigator at the Eunice Kennedy Shriver National Institute of Child Health and Human Development, leads NPC research to help find answers about the disease, which currently has no cure. |
| Camera view of Dr. Porter. BANNER: Forbes D. Porter, M.D., Ph.D. Clinical Director, NICHD Division of Intramural Research |
Dr. Porter: This is a disease where slowing or halting the disease progress is our goal. |
| (Edit/camera cut) The laboratory researcher continues working. | Dr. Porter: We try to understand the cause of the symptoms, so that we can get insight into potentially how to treat the disorder. |
| (Edit/camera cut) Victoria, holding onto her baby doll, is helped by Mihaela to reach inside her mailbox at The Children’s Inn. | Narrator: During their visits, the families stay… |
| (Edit/zoom effect) Exterior photographs of The Children’s Inn are shown in sequence. | Narrator: …at the Children’s Inn, which provides a caring environment for kids who participate in NIH clinical trials. |
| Camera view of Tonya and Julia. | Julia: I like it because I know that the Children’s Inn and NIH is here to support me. |
| Camera view of Mihaela and Victoria talking at a table and later examining a handmade pillowcase that came from Victoria’s mailbox. | Narrator: Early results from the trial have been promising, and the families remain optimistic and determined to help move the research forward. |
| Camera view of Mihaela and Victoria. | Mihaela: She’s doing amazing. |
| (Edit/camera cut) Victoria continues playing inside The Children’s Inn and climbing the stairs to the treehouse. | Mihaela: Things that I never thought I’m going to see her do, she’s doing it. Even just writing. Or running. |
| (Edit/camera cut) Victoria is holding her baby doll and pillowcase next to the mailboxes. | Narrator: Victoria even has plans on one day becoming a doctor. |
| Camera view of Mihaela and Victoria. | Victoria: First, I have to go to kindergarten. Then first grade. Then second grade. And then last grade. Then, I go to college. Then, when I’m done over there, I’m going to go to the hospital and get a job. |
| Camera view of Dr. Porter. | Dr. Porter: These kids are unique. |
| Camera view of Tonya and Julia. This is followed by a series of photographs of Julia smiling near a body of water and smiling on a merry-go-round. | Dr. Porter: You see them and your heart goes out to them, and you want to help them. I think that’s… |
| (Edit/camera cut) Victoria continues playing inside The Children’s Inn. | Dr. Porter: …the unique aspect that drives not only my clinical team but also the basic science… |
| Camera view of Dr. Porter. | Dr. Porter: … group in my research group. |
| (Edit/effect) NIH/Eunice Kennedy ShriverNational Institute of Child Health and Human Development logo appears against a black screen. | [MUSIC] |
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