The Ellie Challenge: One Young Girl With A Rare Disease Hopes To Find A Cure

NBC ID: AR0ZMUIFFT | Production Unit: NBC News | Media Type: Aired Show | Event Date(s): 05/18/2017

Beschreibung

Event Date(s): 05/18/2017 | Event Location(s): Arlington, Virginia, Washington, District of Columbia | Description: INT ARLINGTON, VIRGINIA MS: In interview Leukoencephalopathy sufferer Ellie McGinn says “Hi. My name is Ellie McGinn. I'm eight years old.” STILL: Three-year old Ellie. CLIP: Home video of then-toddler Ellie running with other toddlers and falling. INT ARLINGTON 2 MS: Ellie’s parents Michael and Beth McGinn in interview as Beth McGinn says “I noticed she couldn't do things that here peers were doing. She started falling down when she walked.” MS: In interview Ellie motions with her fingers while counting. STILLS: Younger Ellie. INT ARLINGTON 2 MS: Michael and Beth in interview as Beth says (about Ellie collapsing on a playground) “That's when I really started to look for answers and we started going to doctors. INT MS: Kennedy Krieger Institute’s Dr. Al Fatemi enters an exam room and greets Ellie. MS: Ellie. MS: Reflex tester is used on Ellie’s arms. 2 MS: Fatemi holds the reflex tester as both he and Ellie touch their noses. 2 MS: Fatemi walks with Ellie near medical machines. MS: Ellie. MS: Rear shot of Fatemi looking at a brain x-ray on a computer screen. INT ARLINGTON 2 MS: Beth and Michael in interview as Beth says “A rare degenerative brain disease called LBSL,” and Michael says “That was-- that was a tough day. Not even fully knowing what it was but getting a general understanding that this is a group of diseases that is not going to end well.” INT 2 MS: During an exam Fatemi has Ellie touch the reflex tester he’s holding with her finger. MS: In interview Fatemi says (part VO) “Most people by the time they're in their teenage years they end up being in a wheelchair. In Ellie's case we have been able to use a mixture of different vitamins that provide some boost into her cells to produce energy. Ultimately this is not a long-term fix. We don't know the exact time frame but we believe that we only have a few years left to try to stop the disease from getting worst.” 2 MS: Fatemi examines Ellie using a stethoscope. MS: Closer shot of Fatemi examining Ellie using a stethoscope (both faces unseen). STILL: Ellie having her blood pressure checked. GFX SUPERS: “Leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation” INT ARLINGTON MS: In interview Ellie says “Leukoencephalopathy with brainstem and spinal cord involvement with lactate elevation.” INT MS: “AcureForEllie.org” website logo and “The Ellie Challenge” seen a computer screen. MS: The website with video of Ellie in her bedroom (becomes full screen) saying “You know what's more frustrating than having a rare disease? Not being able to pronounce it” and holding a large sign with the disease’s full name as she says “Seriously?” INT AND EXT DAY MONTAGE: People including person in a hawk mascot costume trying to pronounce the disease’s name (AcureForEllie.org contest that anyone who can pronounce the disease correctly can rename it). INT ARLINGTON 2 MS: Beth and Michael in interview as Beth says “Yeah. We got a lot of suggestions for names that will incorporated her name or somebody else's name who had the disease.” MS: In interview Ellie says “I didn't like that because I don't want a name like princess disease or Ellie disease or anyone's name.” 2 MS: Michael and Beth in interview as Michael says “So, like, princess disease was it. We thought that was a good one until she, you know, kind of reminded the parents always get this disease too.” STILL: Ellie holding a sign with her choice for the disease’s name, “The Awesome Disease.” INT ARLINGTON MS: In interview Ellie says “I liked awesome disease best.” 2 MS: Michael and Beth in interview as Beth says “I don't really know how we feel about that but she was really adamant.” MS: Ellie says “I picked it because if it made me feel good about the rare brain condition, I thought it would make other kids with LBSL feel better.” EXT DAY ARLINGTON MS: Ellie, her parents, and her sister walk all holding hands. INT WASHINGTON DC 2017-05-18 AT THE NATIONAL ORGANIZATION FOR RARE DISEASES (NORD) RARE IMPACT AWARDS 2 MS: Presenters on stage as one says “NORD is honored to present Ellie Awesome McGinn with a Rare Impact Award.” MS: Ellie walks on stage near men. STILL: Ellie on stage near woman (faces unseen) holding a poster of photos of people suffering from the disease. INT ARLINGTON MS: Beth and Michael in interview as Beth says (part VO) “I am really proud of Ellie. She's given so much of herself. And then if I could take away her disease, I would take it away today. I think God put us in the position where she has been able to help other people and she's done it so willingly. She said mommy, if we get that cure, am I going to have my disease anymore? And I was like, well, no honey. And thinking that would be good thing and she started crying.” 2 MS: Ellie and her sister at their bunk beds. MS: Ellie plays with a stuffed bear on her bed. 2 MS: Ellie and her sister at a bed. MS: In interview Ellie says “Well, I want a cure to get rid of my medicine, but I don't feel so good about getting rid of my condition. Because if we got rid of my condition I wouldn't be myself.” 2 MS: Beth and Michael in interview as Beth says “We're in a little bit of a race here, but a race for time for a cure. But I know no matter what happens to her, she will deal with it with a smile.” EXT DAY ARLINGTON 2 MS: Ellie and her sister walk in their yard (becomes slow-motion).

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NBC News Archives
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1274048918
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NBC News Archives Offline
Übertragungsdatum:
18. Mai 2017
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Kein Release verfügbar. Weitere Informationen
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United States
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NBC News Archives Offline
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AR0ZMUIFFT