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Without my parent's help i would eat myself to death - born different

Without my parent's help i would eat myself to death - born different

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Rating: 4.0; Vote: 1
CAMILLE, from Connecticut, lives with a rare genetic condition called Prader-Willi Syndrome, a condition best known for creating an insatiable sense of hunger in the individual. The craving is so strong that if left alone and with access to food, a person with Prader-Willi Syndrome could eat themselves to death. That means Larry and Camille-s mother Kim must create a completely -food secure- environment, including padlocking kitchen cabinets and having an alarm on the kitchen door to stop Camille foraging for snacks. Camille-s sneakiness around food has earned her the nickname the -stealth ninja-, but despite her ever-present hunger, people with Prader-Willi have low muscle tone and burn calories slowly, meaning she is required to subsist on a diet of 1, 000-1, 200 calories a day. Larry said: -Prader-Willi syndrome is what Camille lives with, it-s the diagnosis she-s been given, but it certainly does not define her. She is so much more, she-s loving, caring, kind, compassionate, giving, if you have some sort of animal she-ll never forget the story you tell about them or the animal-s name
Date: 2023-09-12

Comments and reviews: 30


I myself don't have Prader-Willi Syndrome, so i don't really know what's it like to live with it, but i do have a Binge Eating Disorder (BED, which causes me to binge eat (overeat, wehter it's a bag of chocolate cookies, to packet of crisps, to wraps/sandwiches, and now that I'm 23 years old (about to be 24 years old, I still have a problem with my eating disorder but it gets better especially with the help from my parents and my brother, If for any reason i don't want to talk about it with my family, I can also talk to someone else about it, whether it's my friends or a therapist. All I can say that it does get better with the help that I get, even though it's hard to control.
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Please don't take this the wrong way because these people/parents are lovely and so caring and we need more of that.
My questions/statements are more of like What is her quality of life? What is their quality of life? Is this really worth it?
It's just sad to me they have to go through this.
I highly support states that have assisted suicide there are so many people miserable and in pain because their loved ones don't wanna let them go and I just hope this isn't one of those cases.
That's all I'm saying -

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I don't understand why she's only allowed 1000 calories a day normal person eats 2500 calories a day sometimes more and that's normal for a 5 ft 6 girl at 120 130 lb. And that's normal and she's nowhere near that so I don't understand why she's only allowed 1000 calories a day that seems a little bit extreme. 1000 calories a day even without an eating disorder you would feel like you were being starved that's almost nothing to eat---
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I know they care alot but at the same time they aren't feeding a diet that optimises stabilising blood sugar, that white flour and that jello aren't helping. It may be that she has food allergies but still there are tonnes of fiber rich foods to choose from that optimise blood sugar response and keep people fuller for longer which would alleviate two of the hunger sensors
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Although I know this is so hard for her family to deal with, my hope is that her other family members don't develop disordered eating habits around this. It's like they're having to sneak eating around her, and develop these tatics to hide food from her, just to be able to eat for themselves, and protect her at the same time. It's totally messed up.
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Ok but why only 1000 cals a day? Thats really limiting. I get she has a disorder where she feels hungry all the time but any normal person would feel hungry all the time eating only 1000 cals. doesnt it make sense for her to cap it at a higher number since shes so hungry? Kindof confused maybe im just not understanding something entirely
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My cousin has this disease too. She was told shed never walk, never talk and wouldnt live till 5. Shes now in her 40's, walking, talking and an incredible sweet and sensitive person. She even has a boyfriend for a few years now. She also loves babies and kids in general, she LOOOOOOVES coloring with them and playing boardgames.
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We had a kid like this at school (we had a special ed section of the school) and we had a big assembly every year to tell us all that if we see him digging into bins or trying to on the playground to stop him and or get a teacher, and to not give him food even if he pays you for it. Poor kid, man.
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This just goes to show that parents can 9almost) never just blame their kid for their obesity.
If someone like her with a literal syndrome that should in theory make her obese is able to be controlled and have her weight in check, then it's clearly VERY doable.

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They said she's on a diet of 1000-1200 calories a day. I thought the daily to be healthy was 2000 for women. Maybe it's just because I don't know enough about the conditions but I feel like they should be giving her at least the daily recommended?
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Is there no medication at all that can suppress the hunger hormones? I feel so bad for her and people with this syndrome. I have experienced hunger before and wouldn't wish it on anyone, let alone all the time.
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Most parents with children with Prader Willi just give up and give them whatever they want. Camille-s normal body mass is evidence that her parents have done an amazing job. Kudos to them and their hard work.
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i understand what shes going thru its hard like really hard if theirs food near me im gonna eat it and i feel like im starveing and it feels like i need more but dont need more and i feel like im empty
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There are a lot of videos about this or just kids who won-t stop eating junk.
I think the biggest help is strong parents. Too many parents now a-days are weak and let their kids run rampant.

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3: 25 1000-1250 calories a day would make me feel really hungry, I can't imagine feeling hunger 24/7. Is there medication that suppresses it (without negative side affects)
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I'm the exact opposite. People need to remind me to eat. I have an alarm set on my phone for that reason. My mom always said I never ate as a baby. I feel for her
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-Poor Child hope GOD Finally take responsibility and hold the child and all the other children in the world-
COCONUT FAT MTC AND LEPTIN CAN HELP!

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Ugh, wish we had more advancements in technology. Even if some way to curb her hunger. Breaks my heart thinking she can-t get rid of a hunger feeling.
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I have an eating disorder but only bc my mom thought i was anorexic and would force food down my throat its hard for me to eat at all. It sucks
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How is she not morbidly obese? You eat that much, next thing you know, you need someone else's help WIPING YOUR BUTT AFTER YOU POOP
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the dad: i need to disable the alarm system so it doesn-t wake the whole family
the alarm system: FATHER YOU HAVE COME TO PUT ME TO SLEEP?

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Maybe I missed something but why can-t she eat what she wants to? Why is there a diet set for her? Why can-t she have a normal diet?
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Shes on mood stabilizers on top of having prader willi! The mood stabilizers alone make the average person ravenous in appetite.
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proves to me that most obese children are a result of a direct lack of care by their parents. Hats off to these parents!
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I'm a little confused, a woman in her early 20s needs around 2000 calories a day so how come she's only getting about half that.
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Can someone tell me why she is on such a low calorie diet. Would her being on a normal calorie diet satiate her a bit more?
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It is so good to see, that her family is so supportive, and she gets all the help she needs from them. It warms my heart.
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Why can-t she have more then 1200 calories? That-s a little weird. Can you not give her a little more then 1200 calories?
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I can't imagine starving all the time. Knowing you are not but feeling it anyway. It honestly amazes me she's sane at all.
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It makes me so freaking happy when I see parents like this. Absolutely how it should be. Unconditional, beautiful love.
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