Allie's really hungry ...a look at Prader-Willi Syndrome...Could you tell her no?

[Ransey21]

Allie has recently spent 5 months at The Children's Institute in Pittsburgh PA. She is doing very well and has managed to lose a few pounds. We have made our home a food secure environment and we do not give her the opportunity for more food on her plate. I will be posting more videos of Allie soon so you all can see her progress. Prader-Willi is a very confusing and misunderstood syndrome. I filmed this video to show that even after a full meal her brain is still telling her she is hungry. Pri

[56785439]

@Ransey21 hey i ent there to ive been there twice ive ki ndof recntly bee n there like during the summer time after 8th grade now im a sophmore

[iwillworkhard1]

your a nice mom. still keepin it cool and not getting all mad =D

[liamx102]

awww thats cute

[becca4528]

awe....ashley...thanx babe....anthony is my son...he is a challenging 6 year old, but he is perfect to me! i love him so much, and wish that i could take on all of his pain for him!

[stlouiecutie]

My best friends son has pws. Its heart breaking. The poor little guy has a constant feeling of hunger that will never go away. He started sneaking food from the trash can. She has since has to lock it up. As a mother, I couldn't imagine having to tell my child no when they are hungry. She is such a strong woman in knowing she has to tell him no or else he will die. My little buddy Anthony Michael. Such a sweet angel.

[MrsJadehall]

hi i was born pws i know what your litte girl is going trough i feal the same way but i understand now wuy my mum and dad tells me no i cant have more to eat iam 19 yrs age  i was 4 wean docters tould my mum and dad i had pws how old is she? she gorges little girl

[MiaMccB]

Does she constantly feel hungry? Or is it just an intense craving for food? I read up on it a bit but I couldn't find an answer.

[studenttheatre83]

Your kid is absolutely adorable. I'm sure she will understand Prader willi as she gets older. I know you'll fight everyday but I'm sure you're all amazing and you'll win the battle

[salemr86]

I am in medical school and just learned about this syndrome. Thank you for posting. It takes a lot of courage and will hopefully help me be more sensitive and understanding of PWS children and their families as a doctor one day. All the best.

[naruterahx]

No sabes como te entiendo, veo a tu hija y veo a mi hermano pequeño, el hacia las mismas cosas que hace tu hija, la verdad es que la lucha cada día era muy difícil (y es para todos los que tienen esta enfermedad) pero hay que ssaber entenderla como bien has dicho. Hay mucha gente que no entiende ni quiere entender y eso hace que retrocedamos...

Solo puedo decirte que animo, y que son unos niños MUY MUY fuertes y especiales.

Un beso desde la lejania.

[cassiesmum]

Its heartbreaking...poor kid, to sit and watch your child plead for more food is so tough, you must be a very strong person. I have a daughter the same age and it would kill me to watch her crying for more food.

[RixPixable]

Why are you humiliating this poor little girl because of her syndrome?

[LucyShy]

Hard to watch, but unfortunately this is the easy part. When they get older and are bigger and stronger, yet can't go out alone, that's when it gets really hard.

[tara6692]

must be hard to resist giving her food , my friend has pws and her mum is the best she keeps her daughter healthy and happy

[maxellaz]

My cousin used to have pws his parents kept slapping him if he wanted food... He no longer has pws true story I'm not trying to make fun of pws

[musicgirl999]

@maxellaz How did he get rid of his PWS?

[maxellaz]

@musicgirl999 strong dicipline....I MEAN REALLY REALLY STRONG

[maxellaz]

@musicgirl999 OMG!!! sorry bout that my brother logged in to my account.... he's lying we don't have a cousin that had pws!! oh and I hope they do find a cure for PWS....

[musicgirl999]

@maxellaz haha it's fine but yea I can't imagine how hard it must be to raise a child who never feels full

[maxellaz]

@musicgirl999 yeah...if i had pws i'd just fight the urge to eat rather than giving my mama a hard time....

[PrincessAriel2sing]

@maxellaz you really think it's as simple as "fighting the urge?" Not to mention, she's 6, she has no concept of how this is affecting others. I love how you have this sense of righteous indignation, like if "I" had this, then "I" would deal with it perfectly....honestly you have no clue what it's like to struggle with eating. I've been anorexic and bulimic for four years, everyday is a struggle. If I could just "fight the urge" I wouldn't have an eating disorder, and neither would anybody else.

[maxellaz]

@PrincessAriel2sing my bad

[maxellaz]

@PrincessAriel2sing Really sorry not what i meant at all

[56785439]

@maxellaz its not funny sericously i ghave it and it is not funny and not fun its really is a dangerous syndrome we can die if we eat a lot becuase we cant tell if we are full

[maxellaz]

@56785439 i didn't say it was funny nor it's fun... i am in no position to judge like that and like i stated in my other comments that was my stupid little brother and not me i am very sorry for his comments...

[creamsodaistasty]

@emilyloveschrisdrew because it gives insight into this syndrome for others.

[creamsodaistasty]

poor baby :( I can only imagine how it feels but cannot imagine dealing with it day after day.

[troofball]

Are you posting anymore videos of allie, I work with a prader willi child in a residential facility in media pa. He is the cutest thing in the world.

[GDOBSSOR]

This is 2011... By now, they should have developed some sort of drug that suppresses the messages her brain is giving her.

[dreamerloca5150]

omg i wanna cry... im doing a research paper on pws so it brought me to ur video... soo sad

[jensh684]

@gregorkrause - I hope that by "she" you meant Allie's mom. And I think her mom would know. She seems like a wonderful parent.

[emilyloveschrisdrew]

jus wondering...why would you video tape her when you knew she was going to have a tantrum??.sorry dont mean to sound rude but wondering...

[56785439]

i have pw i just laugh at this becuase i do the same thing weith my mom and get angry and metldown and temer tantrum which is very commom for me and other with pw

[troofball]

It's ok allie. I know its hard, but you can do it

[gregorkrause]

it's pretty sad living with this syndrome, thus i don't have it but i'm in a wheelchair with a spinal cord defect called Spina bifida.

[BrainDeadIntellect]

Kodus to you mom. You do great with her. I have helped kids with PWS at developmental camps and they can be a challenge. It's pretty sad but I know how hard it is to raise a child, especially since some teachers are not helpful; I've heard stories. Wishing the best.

[janicew1955]

My 10 year old daughter has PWS, too. We go through this same thing all the time. In fact, my little girl sounds exactly like yours, the quality of her voice is the same, too. Saying no is hard to do.

[kailey44444]

this is soooo sad. it makes me cry every time:( i feel bad for allison and i pray for her. i wish they had a cure for prader willi syndrome

[ericjungleboy]

Haven't they got any kind of appetite-suppressing medications she can take?

[klim1sl]

@ericjungleboy it's not the appetite that's the problem. It's that her brain will never recognize that it's full. People with Prader-Willi will eat until their stomach actually ruptures if they're not supervised.

[anw2345159]

i pray for you!this video broke my heart in a million pieces!i am doing a biology project on Prader-willi!this tought me so much

[Dawoudkhalifa]

I wish she can understand it one day, and i wish they find a cure for PWS