Without My Parent's Help I Would Eat Myself To Death | BORN DIFFERENT
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- Опубліковано 27 гру 2021
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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.”
Videographer: Rajah Samaroo
Producers: Tom Midlane & Natalia Giorgi
Editor: Omar Gobere
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Ok cool 👍
it sounds so wrong when U put this comment on every video. I don't think anyone ENJOYS watching these
I have Prader-Willi Syndrome as well
I literally came here from an Ozempic video. How it creates satiation. I know it’s a random connection but would this help with the desire to eat?
The fact that they kept her from getting morbidly obese (which is frequent for patients with Prader-Willi) shows how well they take care of her.
While it’s unfair for her to always feel hungry, it would be doubly unfair for her health to suffer as a result of obesity. Her parents are so selfless ❤
@@eileensnow6153plus, even if they let her eat to that point, she would STILL feel hungry.
Absolutely agree. These parents have done a fantastic job in helping her manage her condition(s) they would be a perfect couple to educate other parents in managing the condition and proof that if you do it correctly to the best of your ability and with the best interests for your child at heart then it doesn't mean that your child has to be obese like unfortunately the majority with pws are. I even love how they've encouraged her 2 siblings to understand and play their role in helping her aswell. They are all a class act and we can't forget their lovely daughter she seems such a warm kind young woman.
This sounds like.a hormonal problem. It seems to me that her stomach is constantly releasing the hormone grhelin to the brain and not stopping when her stomach has reached capacity.
They should take care of her teeth. Dental issues can lead to a lot of other health issues
Can you imagine what the world would be like if everyone grew up with parents this caring? It would be radically different.
Truly! I realized after watching many documentaries, many killers/felonies had a really bad childhood. With abuse & sometimes even sexual abuse I can't but think what would have happened if their parents weren't such horrible human beings
I can only imagine.😔
My husband and I are like this with our autistic son and I can’t help but think of the children who don’t have caring parents. I need a break from the news at times because of the horror I hear.
@@arielxmoore Same here, we wouldn't need prisons 🥺
Shes so lucky having loving parents because most parents will put their child in group home setting because of their child needs and constant supervision. Also, behavioral issues. I’m very familiar PWS I trained house staff how to work with PWS individual.
I'm a dietitian and I've seen prader willi children rush across the room as soon as they spit some food or drink, and desperately rip open out of date food packets and drinks and guzzle them down in front of me. The fact that Camille is a healthy weight is a testament to how fantastic her parents amd siblings are at caring for her.
They should get hormone treatment
i'm confused about how expired foods conveniently appear in front of said patients
@@darkiepoo8949 You'd be surprised at how much food we waste, It doesn't register as food to most people once we consider them "bad". kinda like how dogs, even well fed CAN and do eat from the garbage/questionable sources.
why are there random containers of expired food in front of all of your child patients 😂
@@darkiepoo8949 dietitian, not a doctor, I presume they go to people's homes to help advise them on stuff
Wow, she's 23? I thought she was like, 15. I'm so glad her family is supportive of her and do what they can to keep her focused on other stuff.
people with Prader-Willi are shorter than typical
@@mslvc2011 she looks younger in general
Lack of sexual development is a trait of prader willi syndrome. She actually does have the physiology of a 15 year old or even younger.
She looks 11ish to me.
I thought she was 10 or 11 years old. Nothing wrong with her but she looks like a little kid. A 15 year old is taller & usually at least for girls more adult like appearance.
I can’t imagine feeling hungry non-stop and not being able to satisfy that hunger. This girl is STRONG !
Me neither! It sounds like such a horrible thing to have to live with 😖😥
Yeah... I can't imagine it.. 😢
horrible :/ wouldnt be surprised if a lot of the people who suffer from pws end up on drugd
That sounds like torture
Nope, she is not. That’s why they have to lock and alarm the doors. But there’s no shame in it.
I could not imagine being hungry literally all the time. The fact that this girl still finds the joy in life while starving all the time is incredible. I can tell she’s a very resilient person.
Ikr, I have terrible dips in my mood when I'm hungry (really bad irritability, physical and mental exhaustion, crying), although it's usually after a long exhausting work day, but still, I couldn't imagine feeling hungry ALL the time. Sounds very stressful for her.
I don't have PW but I have severe dysphagia. I can't physically get food in me and most of my food is a liquid diet. I've never felt full. I don't know what that feels like. Definitely feel for this girl, it sucks when you starve every day of your life despite having food.
ask any fatty that lives near you?
Gosh, lots of people always complain that there hungry and they get angry, yet she has to deal with this all day. There all so strong.
And being limited to that tiny diet… that must be awful 😟
She went to my highschool! I never knew this was what her life was like! Thanks for sharing her experience with us!
What was this amazing girl pop like?
Wow, she went to your school!? That’s so cool. What was she like?
@amethyst1062 probably "like" a person or something
i doubt these people like to claim that they went to school or know these people when they really don't
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.
That’s Amazing! I love hearing that people, despite being different, can defy even medical diagnostics and live and grow up to be amazing people. Your cousin should be super proud. ❤
How does she manage it on her own? Did she get self control or does she have to have a caregiver to make sure she doesn't over eat? I'm so happy for your cousin though.
@@chiarra644 I dont realy know how it is called in english, as I dont know if its a thing in other countries. Its kind of like housing for mentally challenged People. They live on their own, but under care. They have like a supervisor/caregiver that comes by regularly. Like 3 times a Day or something. Or like 4 times a week, depending on the need of the cliënt.
@@noellec7211 Oh okay, where I live that's called ResCare and my sister actually worked there for a while while going to school to be a respiratory therapist.
@@noellec7211what country is this? I work in a similar thing in Quebec, Canada. We call it respite centre if it’s temporary
The dad is such an empathetic person great analogy "it's like hitting your thumb with a hammer and trying to tell yourself it doesn't hurt"
He might also be empathetic because this birth defect is passed down from the father
Ikr, that’s such an understanding way to describe it.
Ik that made me image be it well and I felt sad
Agreed. The way he described her condition with only care and not downplaying it at all made me so emotional. He is an amazing human being first, and a father second. That is the true nature of a loving father.
yes I loved this description. I feel many people would see this as a greedy person who need to control herself but really it's like she's desperately trying to take away the pain like trying to move her thumb out from the hammer. we just can't see that from the outside.
Let’s take a second to honor how respectful the parents are to each other…it definitely starts there. Beautiful family.
They are nothing short of amazing
@@akashambatwamiller6924 Agreed🎯
Agreed
And the brothers!
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The look on her poor face is so… pained. She feels like she’s starving. I’m just so sorry for her and her family. That’s so… I can’t imagine.
She looks absolutely miserable. I know her parents take amazing care of her n she prob has the best life possible but it really must be a hard life. Such an awful condition.
I wish the families and care takers would alter the food they give them to not be all this hunger inducing fat free stuff. It ends up being kind of cruel, just making matters worse. At least giving them actual animal fat and protein wouldn't just create added, pointless hunger.
And I agree her parents are awesome. I just see the cereal, pizza, cups of fruit and I feel so badly for her.
@@joparker9052I think they're trying to maximise the volume of food she can get. Lower calorie foods means she can eat more on such a restricted diet. 1000 calories of meat/high protein foods would be much smaller and not give her as much stimulation as larger meals.
The point is she will never be full or satisfied. Protein won't have that effect of "keeping you fuller for longer" when you literally cannot ever have enough. She cannot physically have added hunger, she's hungry all the time. Feeling like you're starving and being given a small steak on a plate might be upsetting rather than a selection of colourful food.
@@joparker9052 I have a MSc in food and nutrition and I can tell you; they are following a scientifically evidence-based standard diet for patients with Prader-Willi syndrome. They 100% have regular contact with a dietitian. The most common approach is a low-calorie diet designed to maximize the bulk of the diet with small portions spread throughout the day. It's important to remember that individuals with this syndrome metabolize food differently than we do, as mentioned by the dad in the video. They have a slower metabolism, reduced muscle mass, and a higher risk of obesity and related health issues, making it crucial to manage their caloric intake to prevent excessive weight gain and associated complications (e.g., cardiovascular disease). Fat is calorie-dense but metabolises way quicker (1g provides 9 kcal) and is therefore not as filling as fiber for instance, which provides bulk to meals while slowing down digestion and is usually accompanied by vital nutrients (1g provides 2 kcal). A low-calorie diet with nutrient-dense foods helps to combat hunger for longer periods throughout the day.
I love how her parents are helping her and making sure she’s getting nutritional foods and giving her great portion sizes. It’s sad that she’ll be starving all the time and that she can end up eating to death if left with food. It breaks my heart, but I’m super glad she has help and support.
It honestly seems like she's eating even less than she should/could be. I'm confused why they have her at a calorie deficit when they could at least be filling her up with an average amount but maybe there's some medical reason why she has to be eating less than the average person?
@@adaharrisonn It was literally said that it doesnt only effect appetite but also muscle tone and how many calories she burns.
@brokenselena yeah you're right, I totally missed that the first time but I went back and watched it again and I heard that bit so probably a normal amount would just make her gain. I'm actually the same way because of a thyroid condition haha
@@adaharrisonn another thing to consider she is more likely less active than the avg person. they show she going on walks but id imagine the rest of her time awake is under supervision and therefore not moving around as much. plus the meds shes on can mess with body weight.
Take a moment to remember she's 23 yrs old. They've been adjusting and figuring out what works for her for years.
Imagine her out in the real world though.. just legit taking food from shops, off plates.. just hunger.
@@elizabethcrossley6853 uhh don't say that
@@landonjohnson4477 truth hurts doesn't it? Of course it's not her fault, it's her condition but it's still best she's being 'contained' cause she wouldn't last even 30 mins entirely on her own.
@@anemptyspace she didn’t choose to be born with that condition.
Most adults with her syndrome are morbidly obese and have serious behavioural problems. Believe me, these parents operated a quasi-miracle...
When she said "it's hard feeling hungry all the time, it gives me anxiety. " that broke my heart. What an amazing young woman and wonderful family. They are all very blessed to have each other. I wish them all nothing but the best.
Yeah same. I couldn't imagine my food being locked away from me, and that's without her condition. Can't feel good at all even though it's for her own good it still has to be traumatizing.
@@kittycaruso50 I agree, it must be horrible. I'm so glad she has such a wonderful family to help her as much as they do. Be well and stay safe.
This really dives deep; feeling shame and compulsive/impulsive eating.
@@RuffyColada I can't even imagine what this feels like. I wish everyone dealing with things like this nothing but the best and healing. Be well and stay safe.
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There are parents who can't even make the effort for their kids, and then there are these parents - just the polar opposite. Wow, what a strong family to help each other and Cam.
I was starved literally until the age of 6. My grandparents and my aunt adopted my sister and I. I started hiding food to ensure I had some for later. My grandparents called me a liar and sneaky for doing it and punished me harshly and did punishments to try and humiliate me. They were not like theses parents at all. Many years later I was able to cut them off and I have a healthy relationship with food. Very thankful their daughter has great parents.
Don't let your childhood destroy your future.
@@Nok112 Yes,I fully understand as I too was abused.What I was trying to say was that to not allowed the past to negatively affect the future.I needed emotional help and didn't even receive that from the authority and adults around me.
Never seen someone with PW that has been this thin. The parents are clearly doing a great job in controlling her food intake. Poor woman.
I was just about to say that
Just commented the same thing. I'm impressed by her parents.
I agree
Yeah I don’t blame the parents of other PW children unless its insanely bad, but yeah it’s actually pretty amazing her parents care that much
The mother should apply those methods to herself, also get rid of seed oils and other junk that puts you on a torpid metabolism.
This is a part of parenting a lot of people don't talk about. They only look forward to the playing with cute babies and ticking off a part of their goal. While we all pray for healthy kids who become successful, you might have to deal with a "sick" child for the rest of your life. You'll be the adult for the rest of your life. You might have to support your child/children for the rest of your life. It's not something you go into without being prepared and emotionally mature.
Parents who still support their adult kids wholeheartedly deserve praise. 😢
Indeed! It's funny (in a bad way) how we, as parents, never expect our child to have a diagnosis, we're never prepared to care for a chronically ill person, but I think we should start thinking about it.
Yes I’m sure there’s family who will take her in though
Exactly god bless these people who put effort into supporting their children or people they love !
Very true. My son received two diagnoses on Dec 16th. I'm still trying to process it all... The future can be very scary looking that's for sure.
Thank you for this. I have 2 children with Asd
Not the stealth ninja 😆 It's really fantastic they have a lit of humor considering the circumstances. The family support, love and compassion is really beautiful to see. Thank you for sharing this story. I had never heard of this condition.
I took care of a 20-year-old young man in a psychiatric unit with Prader Willi's
syndrome.
We had him there to help him lose weight in order to qualify for a kidney transplant.
Eventually did the get the kidney transplant, and then sadly died in the intense care unit of sepsis.
He was behaviorally really difficult to manage.
So kudos to these parents.
It must be so hard for them to limit her access to food knowing that she’s so hungry all the time. It would break my heart. They all seem to love each other so much.
Yeah. If only other parents would have this discipline with their obese children
I know, I thought the same thing! Especially when they said she was digging food out of the trash. That just broke my heart! 💔😔
Can she eat shirataki noodles or something with zero calories, to fill her stomach up?
@@TheHothotheatlive It wouldn't matter. The stomach fills, but the brain doesn't work well enough for them to know. People with the disease will really eat until they tear their stomachs and die.
@@nutmeg0144 It's not about discipline or obesity. It is a disorder that people can die from.
My mother had a colleague who’s son has this condition. He’s also autistic. His mother worked so hard caring for him and making sure all good was locked away. But she was a single mom and she was at her wits end. He ended up being deemed legally incompetent by the court and was able to move to an assisted living facility that specializes in his conditions and he’s doing amazing. His mother visits him every single day without fail.
That poor mother. So glad she got help.
If you cant handle the possibility of a severely disabled kid you shouldn't have kids
@@MintyUniverse0 Yes, I'm sure everyone with a child is mentally and physically prepared to carry the burden of not only raising them alone, but also dealing with an extremely rare genetic condition that makes them disabled for life. So instead of getting help from people that know what they are doing and know how to help their family overcome the biggest obstacle of their lives, she should have just taken care of it on her own. You know... because once people become parents, they're no longer human. Got it.
@@MintyUniverse0 don't forget that she was a single mum. It would be difficult enough for a couple to deal with, let alone a single person.
@@MintyUniverse0 oh piss off 🙄 as if her child in a facility which can skilfully cater to his condition whilst the mum is growing old is ‘not caring for him’
Shes so innocent..her parents are angels
.godbless their family
I can see from the look on her face how much she's having to go through with this type of condition. I can't imagine. Especially feeling hungry constantly. She seems really sweet
Makes one question why were here and if there is a god does he hates us. Makes my suffering seem small also.
@@miketyson9540there's no god but there's the truth of suffering that needs to be understood
Why wouldn't that new weight loss drug ozempic work on her? Or another medicine blocking the hunger hormone ghrelin? If the effect is just to suppress appetite?
Edit: I believe this would relieve her hunger pains and the feeling she's starving.
I’ve know this family for most of my life and babysat Cami for years. The whole family is as nice as they seem, and cami is the sweetest most gentle spirit I’ve ever met. My favorite memory of her is bringing my newborn son over to meet her, she cradled him like he was a porcelain doll and was so focused on making sure he was okay and didn’t need anything ❤️ She is so incredibly gifted in so many ways.
Wow she sounds so precious. What was it like to babysit her? Did she have any favorite toys or things to do that would distract her from her hunger?
@@mitchbarredo3990 didn’t say she wasn’t a nice girl I can see she is a wonderful girl and wish her nothing but the best. I just want to know more about her.
@@mitchbarredo3990 my mistake. UA-cam notifications will say someone interacted to this comment section. And as a selfish human error, I assumed it was referring to my comment specifically. I also wasn’t trying to come off as combative I apologize for that as well. :)
She's so lovely!!!
Kbear..she is such a precious person, you can definitely see through her❤❤❤
Poor girl. I thought she was about 12. Her parents are doing a fantastic job keeping her healthy. Then again, what parent wouldn't? That's their baby and they need to do what they can.
Not every parent would. Its not as obvious as it seems
My birth parents
uhh not every parent-
I thought she was 8 and she looks very underweight to me
@@MelB868 same
These parents are amazing. The fact that her weight is controlled and they are able to help her through the emotional / mental struggles that come with Pradeep Willi is amazing. Such dedication and love in this family! Bless you guys!
But she's 23.. doesn't seem that she works.or can live on her own, what happens whe parents die or get old and sick?
@@Plaksa2004she has two brothers who can help her.
I am so happy that she got the parents she did. They seem like wonderful people especially the dad with his empathy and positive outlook on “negative” things.
Hell yeah abso lutely
I broke when she looked at her parents with gratitude and sadness and thanked them for taking care of her.
Despite her appearance at her age she has the intelligence to understand that they are making a sacrifice.
She also appears to recognize the love and devotion.
It touches my heart...God bless them in all they do
Well yes of course she has the capacity to understand that.
@@LightningFox7 Hello and a very Happy Healthy New Year! Camille's self-awareness, intelligence level, and appreciation of her parents' fine care are by *no* means the case for every patient. Other vids here on Prader-Willi Syndrome can show you another and more terrifying side of what can happen.
How old is she
@@ragathnor326 23
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My cousin has this. When she was younger she would actually break into the neighbors homes and raid their fridges, cabinets, and garbages. I feel for any individual who has this condition as well as their support system. As a kid I couldn’t wrap my head around why she would do that, but as an adult I understand better about what she was dealing with.
Oh wow, I had no idea this was a thing until now. That sounds so hard 😕
@@CamilaSaurus go to hell
@@Pipipipoopoop bro what?
@@tobydior7040 he is fighting with everyone in all the comments idk 😐 he doesn't have a life and is bored 😑 probably a 8 year old who thinks he is cool cuz he said "hell"
@@Someonebetterthanyou5 lol what a weirdo
It's so sad that she feels 10 times hungrier than regular people yet she has to eat ONLY 1000 calories per day.. The LEAST amount of adult recommend calories.
When I was DIETING with around 12-1400 calories I used to feel like I was STARVING.
So I just can't comprehend how she feels every day.
She is so brave!
I dunno how fat u were dude bit i eat about 1000 kcals a day and i am never hungry. Like…
She might need less because of her stature and in general condition, I doubt her body reacts the same to food than the body of someone without the condition
@@fiorecati8162 lower muscle tone. Similar to down syndrome. Less muscles - > less calories needed
Any parent can now fake this medical condition for their kids and underfeed them until they become emotionally and mentally stunted.
@@LovelyLittleLillies that's not the way it works there has to be a diagnosis and treatment. Obviously the possibility of someone using this for child abuse is horrifying, but with prader willi you need to be extremely careful about your intake
This dad seems very educated with his daughters illness. But also exhausted. I'm glad he's spreading awareness, but it breaks my heart. It breaks my heart this girl feels this way ❤️
It's all your fault Emily
@@RONPEE-STINGER this made me laugh way harder than it should, just what the f**k lol
@ Bill vosby Bad day at the office?
@@onemore7632 I did a double take and cracked up laughing lmao
@@RONPEE-STINGER m dead xD
She is fortunate to have been born into her loving, kind and patient family.
Or unfortunate ?
@@Enthalpy-- what do you mean by that?
@@niceuser1237 Probably meant that if she was born from another family she wouldn’t need to suffer from this condition.
@@rbt-0007 ooh 😬
@@rbt-0007 it is rarely inherited. It usually occurs randomly.
I experienced bottomless hunger after anorexia and it is honestly the worst feeling ever. I can't imagine having to live like that for the rest of my life
I went through that too. Am going through it.
@@sarareiss6523 i hope you get better and recover. Remember that even though i dont know you i want you to be ok. Wishing the best
Oh this sweet girl. I’m so glad she has the support system that she does. Even with the pain she must constantly be feeling along with her mental health struggles that steam from her original diagnosis, she’s still smiling so bright! You can tell her dad is all in 100% invested (and mom too, she just didn’t talk as much which is okay!) I appreciate this story a lot.
This poor girl. I had no idea this kind of condition existed. Thank you for sharing this story!
There's documentary about this condition on youtube. It's really sad, I remember one of the kids in the documentary ate 💩 from the cat litter box. Its disgusting but telling at the same time on how powerful their hunger is
She’s a woman not a girl
@@ann0y1n98 I'm aware - I tend use girl for anyone who's female and younger than myself, but I understand that it can be misconstrued as me saying she's a child. It's not my intention to be rude, it's just an old habit.
@@juliepepin3988 Thanks for sharing! It's really interesting and really sad.
@@Emily-ck9ji it’s okay I’m just trolling always
I couldn't imagine what it'd be like to feel like I'm starving every second of every day. Absolute torture. She's a strong woman surrounded by a strong family.
And imagine watching your child suffering and troubled as if she's starving but you can't do anything about it
Omg that would be amazing u could eat a thousand cakes and nit ever be full
@@DuckyAnimations02 Imagine having a feeling of starvation 24/7 and not be able to ever satisfy your hunger? It wouldn’t be amazing, it would be horrible!
@@nishikigoi. imagine the feeling of having the taste of a million muffins and cakes and choclate and never feel full
@@DuckyAnimations02 Ok then kiddo, I hope one day you get Prader-Willi Syndrome, so then you get to eat all the food you want and NEVER get full :)
It makes me so freaking happy when I see parents like this. Absolutely how it should be. Unconditional, beautiful love.
This family is so precious…I wish them all the best…they are doing the most they can to make sure she is healthy and happy
I couldn’t imagine that pain. Bless her sweet parents. They are truly angelic and what parents SHOULD be.
I have a friend with a child that has PW. As if that wasn’t enough, another one of her children developed anorexia. She’s an amazing mother and both children doing well!
why r u demonizing eating disorders
@@katedavies5112 whut
@@katedavies5112 uhh there wasn't anything in the comment which say that??
@@katedavies5112 what, if you’re implying that eating disorders shouldn’t be demonised you’re a bit out of it. As someone who suffers with anorexia and has been in and out of hospital. They should be demonised
@@katedavies5112 I have an eating disorder and the comment wasn't doing that.
It is hard on parents to take care of a child with an ED, that's just truth. It's not demonizing them.
I wish I could give this entire family a big hug. It really puts your own problems in perspective. Such excellent caregivers.
This sounds so difficult for her to go through, but it's awesome to see what a kind and sweet young lady she is.
This is so crazy, I worked with Cami for about 3/4 years at a camp she used to go to. She really is one of the sweetest people I have ever worked with, always trying to help others and make friends. I really hope you're doing well Cam! Proud of you.
Definitely she was a good camper i miss working there
Girl shut up lmao
@j 🤣🥴
@j 🤣💀💀💀💀💀
sorry but i kinda think your lying
When she says "It makes me feel really good that they take care of me all the time" you can just feel the love this family has for each other. I don't even see any genetic condition, I just see a supportive and loving family.
…you don’t even see any genetic condition, which is what this entire video is about
@@snoopdoggthecertifiedg6777 This comment is so wholesome I don’t even see the overt virtue signaling 🤣
@@snoopdoggthecertifiedg6777 i think they meant that it’s like she’s watching a video about a warm, loving family not about a genetic disorder
Exactly. Instead of feeling sorry for them, I am almost envious. These are the kind of parents we all deserve.
It’s wonderful that her parents do all they can to keep her healthy, and even though they control her intake so she doesn’t make herself ill, they also make sure that she has her treats❤
What absolutely wonderful parents. Ill never know what that feels like, and as i get older the loneliness of never having any family member love you gets worse. However unfortunate she is, shes also very fortunate.
I can’t imagine how she doesn’t just run away and try to buy/steal. Great job to her parents.
Exactly!
I wonder if she is on any meds to suppress her appetite
@@alessandrac1940 it doesn’t work like that, unfortunately. What’s triggering her insatiable appetite isn’t what triggers our hunger cues. I have a cousin with it. Hormones and ssris have been known to help other symptoms like anxiety. Prader-Willi is predominantly caused by part of the fifteenth chromosome being altered or deleted during conception. It’s not a Band-Aid fix at that level, it’s quite brutal honestly. Her parents aren’t exaggerating here, it literally dominates their every waking moment, it’s coming down from the hardest drug but knowing you’ll get to have a little hit every few hours, just not enough to feel better. Never enough. They literally would gorge themselves to death in a sitting if they could. There’s no such thing as being too full, pain from eating too much is less than the unquenchable thirst.
@@bellasampson7398 so if her anxiety levels were lower she would still overeat, right? Since basically her brain doesn’t know her limit
@@bellasampson7398 So will people like Cammy or your cousin ever be able to live by themselves or will they always need to be in care? Is this something they can dominate or will it always control them?
edit: wow, this comment blew up! just wanted to give a little update, miss eden is doing wonderfully. she just turned 8 years old a few days ago, and is doing well at school! i don't know much about her medications or specialists or anything like that, that's all stuff that my aunt handles. but from what i can see, she's a happy, healthy little lady :)
my cousin has PWS. she's going to be 8 years old in april. when she got her diagnosis, it turned my whole family's lives upside down. it's the little things you don't even think about: leaving a snack out on the counter, or having a piñata with candy in it at a birthday party. my aunt and uncle have done an incredible job raising my cousin and teaching her to have a healthy relationship with food. she's so sweet and caring, and will talk your ear off about cats or horses. when people on the street see her, they see a disabled little girl. but to me and my family, she is more than her disability. she is our sweet little eden who rides horses and runs around outside and is full of energy and has the brightest laugh. she's more than her disability.
that sounds like an amazing little girl :)
@@skinconic ????
@@skinconic … I don’t know what you’re trying to imply here.
I wish more people would see people with disabilities instead of a disabled person when they look at someone they don’t know . Your cousin sounds like a lovely girl with a very loving family . Best of luck to you all
Love this
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.
What a difficult situation for her😢 I can’t imagine how does she feel when she’s hungry and can’t manage that hunger…
My sweet sister had Prader-Willi syndrome. I miss her so much. She passed a year ago on the 30th of August at the age of 44. She had the biggest loving heart of anyone I know. My parents are superhero’s in my eyes for the loving care they provided. God bless you all and continue to stay strong and bonded.
I feel so sorry for you, it must be heartbreaking losing her. Your parents are great people ❤
I'm so sorry for your loss you're also strong girl
Your parents are heroes. She was blessed to have them as are you. Best wishes
I've struggled with binge disorder and it was hard enough to deal with mentally. I can't imagine on top of that having a real physical hunger pain. She and her family are very strong and I wish them very well
Same here. Also some psychiatric medicine had made me always starving, I could eat too much but my stomach felt empty, I needed more. Couldn't sleep from the hunger. Miserable feeling. Poor woman has been through a lot.
I'm still struggling with binge ed, it's been a year now it sucks
@@mango11119 I struggled with it for a few years. It is rough and disheartening. The only thing that really helped was to stop trying to diet or restrict what I can eat in any way. At first that was scary, but after awhile I started eating healthier by choice and the binge episodes subsided. The weight came off without dieting. The binge episodes only ever come back if I try some diet, so now I just stick with intuitive eating. I highly recommend the book “brain over binge,” if I had just listened to what she wrote in that I would have gotten better so much earlier. I wish you all the best! You can get out of the cycle!
@@mango11119 I hope you get better, I’m recovering from mine.
The most disheartening part is that not many professionals are aware of these types of neurological and genetic disorders, and they often misdiagnosed the patient with the incorrect ED, which ultimately prolongs the process of helping them.
Remarkable parents. I couldn’t imagine how difficult it has been for them to find balance for their family but from an outsider perspective they seem to be achieving just that. The world needs more families like this
Poor baby 💔. These parents are AMAZING and deserve a medal! I can’t imagine how hard it is for everyone involved 💔
Her parents seem to be doing a great job. It’s extremely hard for people with PWS to stay at a healthy weight.
This was my thought exactly
But isn't 1200 calories too little for her size? It's the recommended intake for a 2-3 year olds. It just seems a little insufficient given that she isn't smaller than a 13-14 year old who needs more calories than that. 🤔
@@tamara09090 Have you watched the video? Her father stated folks with PWS don't burn calories like most folks. That's most likely why she gets fewer calories. Also the average suggested calorie intake for an adult is 2,000. She's 23 not a kid.
@@stephaniesouth6073 I didn't say she was a kid, I said she is built like a 13-14 year old, thus was confused as how 1200 calories could suffice her needs.
@@tamara09090 because she has PWS. They have low muscle tone and a slow metabolism. They literally need less calories than people without the syndrome, that’s why it’s rare to see people with it who are also at a healthy weight. 2000 calories a day would cause her to gain weight rapidly.
I wouldn't of guessed she was 22, she has a very youthful look. But to always feel hungry, or never feel satisfied from food..yes must be hard and I'm glad her doctors and family have a plan for her. Over eating makes you feel bad in your body, but never being able to feel full or like you've eaten enough even though it should be..I couldn't even imagine what that would do to your body over a long amount of time. Thankfully she has her family to help prolong her life and well being in the long run! I wish you all luck and continued success during your journey thru this!
The reason she doesn’t look like your average 22year old is BECAUSE of her syndrome, NOT because she just has a ‘very youthful look’.
@@JoJo-zx9sc I thought she was about ten
@@JoJo-zx9sc the other pws documentaries don't show very young looking patients. They all looked their age
Mental torture.
23!
I have food addiction and used to be morbidly obese. When I was trying to lose weight and overcome my addiction I used to think about how children with Prader Willi syndrome had to experience constant hunger and it gave me a greater perspective to overcome my small discomfort in comparison to what these children suffer.
I literally just now told my husband about how I will no longer complain about being hungry. I also have a food addiction, I am on Victoza to help with my appetite issues. Went from 338 lbs to now 273 over the course of 2 years.
@@chiarra644 Great job! Keep up the good work! Nice to see someone doing it slow and steady rather than in an unhealthy manner that is how you get long term success!
@@kyleegabby8883 Thank you so much!
These parents are amazing. So understanding, compromising, caring, compassionate. Honestly there is not enough affirmations in the English language to describe them!
The empathy is palpable here, you can really feel genuine compassion radiating from these parents. Patience, compassion, and real empathy are things that sometimes must be practiced, cultivated--- it doesn't come easy. But they're doin it 100% here, best wishes to Cami and her family
I agree they really are.. this family is wonderful. This family does radiate all those things and its no surprise that they are Christians. I could tell immediately by the way they act that they were christians. God is radiating from them its beautiful.
@@jenniferallen4420 These are the type of christians I would want to meet (unfortunately that hasn't been my typical experience, but I wanted to give them an extra shout out). Religious or not they're a good example for everyone :)
@@lostpelican1883 well you know unfortunately as a Christian myself its rare to meet people that truly live for God. Most fall short myself too.
But these parents are truly showing a love called "Agape" and its a love that comes from God. Its a perfect love.
So beautiful
_when she said she liked having her jello, I smiled. I’m the same way. Small stuff like having my snack makes me happy. Im glad she has her parents to help her._
Why do you write in cursive?
@@Boxofcare666 _sweetie that isn’t cursive. It’s_ *ITALICS* _and because I want to I guess. Idk_
Mm my little snacky snack 😩😫
@@Boxofcare666 Lmaoooo
but why in italics
I have a niece with the same disorder . She has developmental issues as well.
My brother , her father is wonderful . Your daughter is blessed to have you.
The fact that she's not obese is a testament to these parents amazing parenting and patience 🙏💕
Dude. When I’m hungry I am such a grouch. I can’t imagine feeling desperately hungry like that 24/7. What an amazing young lady expressing such gratitude for her parents, life, and jello! She can teach us a thing or two about strength and gratitude.
That's crazy. Other people with this condition usually get overweight because parents don't have the strength to prevent their kids from overeating. Glad to see she doesn't seem to hate them.
Not only doesn't she hate them but she loves them for it. She knows that they are saving her life with their actions.
And many ppl with PWS are also overweight bc their metabolism is also much slower than the average metabolism (even compared to hypothyroidism), I've already seen some parents as caring when it comes to control their child's food intake (and ofc had similar resources) and they were still overweight bc of that really slow metabolism
She thanks them for taking good care of her in the video. Hate is no where near that girl and her parents.
@@woundedsaint8684 Encounter Ministries UA-cam page. (Mark Hemans)*
My youngest sister has this same syndrome. She is also deaf so this adds to the complicated food issues. She is the youngest of my 7 siblings. So with this many people the struggles with food is all too real. God bless your family!
Good on the parents for being so diligent in her care. Most with this condition are grossly over weight because its so hard to keep them from steeling food but this girls parents have done an amazing job putting in the real effort to care for their child correctly.
I went to school with her and she has always been the sweetest girl ever! Knowing she has to live with this is so sad but her parents are so amazing!
Hello my English is not good why she's always hungry
@@ladyAI171 she has a syndrome where it feels like she is starving all the time. Her body will never feel full no matter what she eats and it can be extremely dangerous to overeat especially when you don’t know when to stop.
@@dunyasalem8850 god
@@ladyAI171 She has an illness that makes her hungry
I also went to school with her when I was younger as well. She is a very sweet person
Camille's parents seem awfully stable and calm. Kudos to them and the brothers for creating such a calming environment.
What wonderful parents, and her brothers too! I’m so glad she has such a supportive family.
Such good parents. ❤ hats off to you both.
Cami is literally the sweetest person ever I went to high school with her, everytime I saw her or happened to have a class with her (we’re the same age) we always said good morning to each other.
I swear on every single video someone would comment something like ‘I used to know this person once upon time’ 💀
Mhm right
Cap
@@C0OKI3S a really good day to you too!
Maybe because people can be really exited when they come on television and spread it around in their community? And its way more common tell your family and friends, not your enemies?
Just a suggestion.
Sure bud, sure.
“It’s going to be difficult but it’s going to be okay” I’m a single mom/dad to a beautiful special needs ten year old. She has cerebral palsy & more developmentally delayed challenges. She’s amazing and has taught me more than any other human on this planet. I’m so proud of her and of this family! Thank YOU for reminding us it’s gonna be okay ;) xx
You're doing so well💜
Parents and care takers like yourself are VERY VERY special and so needed in this world.
I'm a special needs child and if it wasn't for my mom I would have turned out sooooo much worse ...
I wouldn't even be able to have my own life.
I just want to say that we appreciate people like you SO MUCH.
Even though we often can't express in words, (I have selective mutism so I know how it is to be mute)
we really, really, truly do understand and know how hard our care takers are working.... Every since early childhood 😥
You know why it's gonna be ok though?
Because love is stronger than any disability or challenge
And please take care of yourself, you're a strong beautiful worthy mom and I'm A HUNDRED PERCENT SURE your lucky daughter is very much aware of how much you've done for her already
Don't give up
But don't forget yourself sweet woman
💜💜💜💜💜💜
💪🏼💪🏼💪🏼💪🏼💜💜
💜💜💜💜💜💜
Also your hair is extremely pretty in your photo and purple is my favorite color!! 😊
Happy new year strong mom 💪🏼🎉
so sad
That's sad keep being a great mom and dad to that 10 year old 😊
God bless you and your daughter!
@@RosieBrownie your comment was so sweet
Bless you
I have had a client with prader-willi syndrome. A cute 8 year old boy. He always told me that he wanted to run away, but he couldn't run away from himself. When I took him to the park for some R&R therapy, and he would pretend to run away from it. I had tears in my eyes watching him "run away".
This literally makes me want to cry, protect this girl at all costs
Give a shout-out to these parents for doing the most and the BEST for their daughter.
Hear hear❗👍👍👍
They are amazing . Of course ... with me ... if there’s cinnamon buns ... one will disappear ...
I have an eating disorder, and sometimes going like, three days in a row with only 800 calories can feel like torture. The people around me haven't really experienced it, but when you're truly starving it deprives you of compassion, logical reasoning, comfort... Very painful. They seem like a loving, nurturing family. Reminds me of my own. 🙂
I hope you are getting help for your eating disorder. They are so difficult to live with. My heart is with you.
What is the ED called?
I have had an ED too but I don't think it's fair for us to compare our situation to hers. Choosing to starve oneself isn't the same as being born with a horrible genetic condition that makes you constantly hungry. We choose to be hungry, she doesn't.
No you haven't.
@@susanferretti5781 Never suggest psychiatric help, there is zerp benefit to it.
Anaphylaxis to so many foods I can relate to this sweetheart. I know how it feels to have to read labels instead of just digging in. Stay strong everyone!!!❤️
What fantastic parents they are. I can’t imagine feeling hungry all the time, especially to the point where you would eat out of a trash can. What a strong young woman.
5:08 I've never met a dog that didn't want to go for a walk 😂.
This young woman is a sweetheart, I really admire her strength.
thats what i was thinking hahahahaha lazy pupper!
Ikr! It's probably cold out lol
@@dustin628- So true!
I’m glad you haven’t met my aunts dog. My cousin is very lazy 😭
They were recorded that as b roll so maybe they did so many takes that the dog didn’t feel like being brought outside and inside again. Or maybe it was just too interest in camermen being there
These parents are so mature and level headed and caring, so happy she’s got them!
Wow what an amazing family… wishing you all the best and keep up the good work and unconditional love, the world needs more of it.
This is sad, I’m glad she has a great support group in her parents. A hungry kid is polarizing for a parent and this is everyday. Sending you guys love and strength, truly a wonderful family.
That’s something to live by “yeah it’s going to be difficult, but it’s going to be ok”….these parents are so strong for their babies. S/n: the puppy was so comfortable on the sofa
I worked in several prader willii group homes about 15 years ago when I first started working in the human services field. It is incredibly difficult and these parents have done an incredible job. I feel like this is one of the most difficult disabilities to deal with because of how much you have to keep an eye out for things and stay on top of everything. Not at the agency that I worked with, but at a separate agency, 2 individuals with pws passed away because they went home to visit their families for the holidays and snuck away with large amounts of food and ruptured their stomachs. I cannot imagine never being able to feel full after having a meal and that is literally what these individuals deal with on a constant basis
That’s tragic. I can’t imagine what it must feel like to be compelled to continue eating until my stomach ruptured. Very sad. Devastating for the families, I’m sure.
but what I don't understand is, the people affected by this must know that if they eat too much they'll die? or is it because of their mental disabilities like the father said, that they don't realize what their actions would do to them?
@@LaraOlina It's that they feel so hungry that it overrides everything else. Feeling like you're starving and wanting to do anything to get food is a basic survival instinct that has kept humans alive. With this syndrome though, there's no full feeling, so you eat and eat to try and stop the starvation feeling, but nothing works, and then eventually your stomach bursts.
@@LaraOlina if you're like really really starving would you stop to care to think rationally? What they feel is probably more like "If I don't eat now I'll die"
@@LaraOlina dang you clearly don't know what it's like to have extreme hunger
Camille, you are a beautiful person. I am so sorry you have to deal with this but remember that you are strong and have some very amazing people in your corner. Take care and keep going, you deserve everything you want in life.
Sweet family . Poor Cami's voice shakes and I tear up 😞💕
One of my closest friends was born with this genetic disorder. I can’t imagine what she goes through on a daily basis. She’s a warrior for sure! One of the kindest most thoughtful loving people I know.
Has she tried GLP1 Agonists? They can nearly eliminate hunger and are well tolerated in PWS patients.
@@rexuisus2802 This is some thing that’s brand new that I have never heard of. I’ll have to talk to her mother and see if she’s heard of this.
Do amphetamines nor work? Or diet pills like phentermine? They reduce hunger very intensity
@@edubble5003 The issue with amphetamines is that they can have unintended side effects. Whereas diet pills are often not well tested on children for ethical reasons.
@@rexuisus2802 ohhh interesting I never thought about that. Thanks for replying
I can only imagine how this poor girl must feel. She probably thinks about food a lot. She looks like such a sweet person.
Woman she is 23
@@2000firegirl To be fair girl can be used for both adult and younger females. There's not the same leniency as with "boy." Although there are adult women who would not like being called girls and that should be respected; there are also adult women that do call themselves girls interchangeably with women (eg, "girls night out" instead of women's night out). This is more common for young adults in their late teens/twenties, though I've seen some older folks do the same
@@cameronschyuder9034 calling an adult woman is kinda patronising and saying ‘there’s less leniency with boy’ just show sexism, also it’s different when women call themselves girls cause y’know it’s themselves. I noticed you didn’t mention how men often have a ‘boys’ night out as well so not just women.
Also you calling women ‘females’ made me cringe
@@dinthevoidalspeck2582 omg get over it. It’s perfectly normal to call a young woman a girl depending on the context. I’m a woman in my early twenties, a while ago I had a check up with a nurse and she told me my blood pressure was “too high for a girl my age”. I was not bothered, young women are often called girls.
@@hawaii3231 i’m just saying that when strangers call women girls it’s kinda disrespectful
Poor baby. 😢
My heart goes out to her & her family.
Be great babygirl!!!!
It's really wonderful how they've came together as a family and helped Camille with her PWS diagnosis! I'm glad to see they've been able to keep her at a healthy weight even in her 20s!
I cared for an individual with PWS for a number of years and it truly is a very complex syndrome and can teach you so much. Her parents seem incredible and she looks so healthy. I wish them nothing but the best.
The amount of pain she has to live with… tragic. And yet she still smiles and shows gratitude and grace. Bless her soul
Aw, she's so sweet. It breaks my heart that she and her family have to go through that.
What a beautiful and loving family and such a sweet woman. I can't imagine what she has to go through daily, but she still has a great attitude
Bless this family. This young lady is so well-spoken. Normally people who have this diagnosis have a hard time expressing themselves without anger or high unstable emotions.
Well done mom and dad. ❤️
The mood stabilizers probably help a lot too. My sister could have used that. PW made her get angry very easily.
Her dad pointing out all of the the lovely things about her made me tear up. Such a beautiful and patient family. Wishing them so much love💖✨
What wonderful parents. They love and protect her so well
Thank God she's with a loving family ,caring parents, she's a beautiful young lady