Laura Quintero • about 14 years ago

Our family has been living with PWS for 12 years. I'm often told God gives special people children who have challenges, that He knows what He is doing and who will be able to handle it. I am hear to tell anyone who will listen, my son is a gift, a blessing, he has forever changed my life...for the better. He humbles me and challenges me to be selfless. No God didn't give my son to me because I could "handle it", He gave him to me because I was the one lacking and in need of refining.

karen macsween • about 14 years ago

This is for my beautiful friend Janet Morrison who has PWS. Please support this cause as I can't imagine a world without these beautiful, gifted children to teach us how we should be living. Janet has so many friends and has touched thousands of people with her laugh and wonderful childlike faith.

Josh Foster • about 14 years ago

Not one of those children looked morbidly obese... I really did not get a clear picture of the disease or the need for research or this organization's mission from this video. From the description and the comments I get a better sense of the urgency associated with this disease and movement. The video is an emotional ploy, "sad music and cute children" :( disappointing

Richard Baehr • about 14 years ago

Josh you raise a great point so I will explain a little better
Most of if not all these kids including my Raymond
Are on HGH (human growth hormone) injections
Which control metabolism and helps with all the fine motor skills
Low muscle tone, low bone density, failure to thrive
And Strict diet and routine . And yet they still don't feel full
And at any givin time can and will eat themselves to death.
You can learn a whole lot more at http://
Pswausa.org I hope I made it a little clearer
Richard. Dad to Raymond 6 PWS
Ps. Raymond is still in ICU for growing rod surgery
On 4/26/2012 from severe scoliosis which is also
Another major issue with PWS

perla mondriguez • about 14 years ago

Hi Josh, The video may not have made you feel the need for research because it didn't focus on the fact that children and adults think about and ask for food though out the day every day. It didn't say that they will steal and lie to get it. It didn't say that their metabolic rate is about 1/2 of yours and mine. And the reason for that is the video focuses on what we chose to do as a group- host walks to promote awareness and healthy living and eating.

The video is simple but to the point: People with PWS do not ever feel satiated and they have very low muscle tone. A combination that leads to morbid obesity. It is a huge challenge to fight against PWS but with LOTS of effort many children and adults are able to maintain a healthy weight. Which is the point- to show how we as a group/community fight the odds and work hard to promote healthy eating and living.

You do make a good point though- our kids are cute. :-)

perla mondriguez • about 14 years ago

Like Richard said, a lot of our kids are on Growth Hormone until insurance doesn't cover it anymore (18 YO or so). And Growth Hormone does help but we also ensure to keep a very lean, healthy diet.

Keegan Johnson • about 14 years ago

I'm glad you have got a sense of the urgency of the disease and the movement. PWS is a complex disorder and can be confusing.

- Our children can be skinny even though they are genetically programmed to be obese.
- Our children can eat normal, healthy meals and still gain weight.
- Our children are cute, but have an ugly disorder that leaves them constantly hungry.

PWS is an example for the rest of society. It gives us a window into obesity.

- We can learn how to stop childhood obesity before it begins, as every PWS parents deals with this daily.
- We can learn how the hunger mechanism works, because research into PWS is showing us how it is broken.
- We can learn that just because you are obese doesn't mean you are lazy and just because you look cute doesn't mean you are healthy.

With all of this complexity, this video shows that we can eliminate the challenges of PWS and obesity, simply by starting and taking One SMALL Step.

Jen Baffi • about 14 years ago

Everyday my husband and I and all of our son's caregivers are the external mechanism that enable Harry to be thin. We are an extreme example of what can and needs to be done to fight obesity. The video shows the results to the world: by eating "right" and excercising from birth, even genetically predisposed people to obesity can avoid it. My best friend always says she wishes my husband and I could make her meals everyday so she could eat like Harry. When I tell people about what and how Harry eats, his "special" diet, I always preface my explanation with the statement, "actually, he eats the way everyone should eat." What you see in the video are the results of the One Small Step all of our PWS families are taking: it shows the world that obesity can be beaten. It is not easy and every family goes down a difficult road of ups and downs battling the weight. But our battle and video shows the world it can be done. We need to get that message out. It can give hope and inspiration to many. And unraveling the mechanisms behind the extremes of PWS, will help the world too. We don't know right now all the ways this understanding will help, but we do know that science learns from the extremes in nature and this knowledge in turn benefits all.

Robert Schoenberger • about 14 years ago

I left the first comment on this post and have watched in awe what a dedicated group of people can get done. To borrow a phrase changed a little but we all know so well, ONE SMALL STEP FOR PWS FAMILIES, ONE GIANT STEP FOR HUMAN KIND!

Thank you from the bottom of my heart for all those who have supported this effort.

Robert Schoenberger (a proud PWS Grandfather)
Elizabethtown, PA

Cecilia Wile Kresch-Mcgonnel • about 14 years ago

My son Daniel is a high functioning, 22 year old man. He has been an active participant in his diet since he was a young boy, weighing his food and counting his calories. He is limited to approx 1100 calories per day at home and maintains 230 -250 lbs at that extreme. He goes to his father's home most weekends. He is weighed on Friday morning and on Monday morning. He can gain 15 lbs in one weekend at his Dad's. The usual is 10-12 lbs. If this yo-yo would break, he would probably weigh less on average. He is, fortunately for me, thanks to genetics and growth hormone, 6'2" tall. Yet, despite his knowledge of his struggle and dedication to his diet, if food is left available, he will eat it. He ate a jar of peanut butter last week, that was inadvertently left out. He ate 1/2 a box of cookies that was in a closet that was left unlocked. He has eaten jars of mayonnaise, bottles of ketchup, blocks of cheese, the list goes on. He is able to get his hand through the narrowest of spaces to try to reach food. I tease him that he is like a rubber man, getting his wrists to bend in unimaginable ways. The horrible part about this syndrome is that no matter how aware they are of the consequences of their actions, these individuals will eat whatever is left available to them. They cannot control the urge. It is more than a compulsion, it is an inescapable necessity to them. Daniel said that his Prader-Willi takes over and his brain doesn't work when he sees food is available. He can control himself at meals, but left to his own devices, he will eat until food is gone. For this reason, no matter how intelligent and self sufficient he is, he will never be able to live on his own or have a real job. His dream is to marry and he talks about how his wife will lock the fridge and cabinets at night and unlock in the morning to make him his breakfast. He does not realize that this dream is unrealistic and I hesitate to burst his bubble. I dread the day I am gone and there is no one to care for him as well as I do, for, other than his sister, no one else truly understands what a struggle his life is. It is not a matter of self control, it is not a lying issue, or a sneaking issue or an honesty issue, or a thieving issue. He is genetically programmed to get food in whatever way possible and if that involves lying to cover his tracks, stealthily sneaking into a room while you are looking the other way, or taking money left out and sneaking off to the deli, he will do so. We keep him secure. We keep him safe. We keep him healthy. It's our job. So, he may not be morbidly obese, but that does not make his struggle any less life threatening. If we let our guard down, it is right around the corner.

Vassa Blandizzi • about 14 years ago

My nephew Dante has Prader Willi Syndrome and he is thriving because his parents are working 24/7 to do everything they possibly can to maintain a healthy ,structured routine around food. I have witnessed the obsession he has with food and the temper tantrums that occur because he is CONSTANTLY hungry. If you think parenting is challenging, try parenting a child with Prader Willi. Try refusing your child food on a regular basis. Do we have any idea how much energy, patience, sacrifice and parenting skills is required to raising these precious gifts from God. We must win this contest so we can bring more awareness and more funds for research to find a cure so these children can live the peaceful life we all deserve. PLEASE CONTINUE TO VOTE UNTIL MAY 11TH

Shanna Spry Houghton • about 14 years ago

My son, AJ, has Prader -Willi. There are many challenges he faces daily. I wonder every day how much more he could learn and live if he didn't worry every moment about how hungry his stomach is. I believe the research that finds a to help pws with their hunger will help all people who struggle with weight. So this isn't just for pws. This is for all humanity!

Joy Key • about 14 years ago

My daughter Krista is 32 years old and has faced the challenges of PWS all her life. She is a message of hope and inspiration to all of us!!! Please help us to fight this syndrome with research and hope to all our families of America that struggle... Please help us with our fight to help our children!!! We can do this if we all stand together and get the message out!!

Darren Fichter • about 14 years ago

I too had never heard of this Syndrome until our youngest son was diagnosed at 1 month of age.
We all need to spread the awareness!!
He is a joy and a blessing to be in this world!

Janis Williams • about 14 years ago

My 11-year-old daughter was diagnosed with PWS two months before she turned 5 years old. By then she was overweight. She is still overweight. She has never been on growth hormone, she is very short. You cannot see poor muscle tone in a picture. Maybe, the video should have shown people with PWS who aren't fit and trim. Maybe that would give people a more accurate view of life with PWS. There are plenty of those children and adults who are overweight and struggle every single day. My daughter is supposed to be on 800 calories a day. It is so unnatural to deny food to a child who is crying because they feel hungry.

Léo Bernard • about 14 years ago

Votez tous les jours s'il vous plait ! VOTEZ !

Brad Hall • about 14 years ago

Good luck

Manny Cordeiro • about 14 years ago

We can make a difference. Life is 10% of what happens to you, the other 90% is spent on how we react to it. Please vote, and get the message and awareness out ! Research will help our children and loved ones who live with PWS. Proud father of Julia (6-PWS), and Noah (9).

Manny C

Loren Kahakua • about 14 years ago

My daughter Layla who is now 5 was diagnosed at two weeks. We are one of the lucky families that caught it early. At the time I have never heard about this disorder, but through support of our immediate and extended family we have been able to manage it and raise a beautiful little princess. I read through all ofthe comments and I am amazed at how much of us there are out there. I believe that if we spread the knowledge we will educate and inform many others! God bless you all

Pat Dalton • about 14 years ago

My grandson has PWS. He asks for food all the time. Food is only one of the challenges with PWS. Our children's physical progress is delayed. My grandson is 3 and does not talk. He is impulsive and runs - not walks. Today he fell twice scraping his knee. He obsesses and repeats continuously things that catch his attention. He is the love of our lives and we will support his endeavors. We had never heard of PWS before he was born. This forum allows us to break through the barriers and help everyone understand the issues and research needed to help the children and families.

Tyler Yun • about 14 years ago

Hey guys I am a 24 year old male that has this syndrom we need all the help we can get and stop everybody who has this monster because i would not like to be always hungry and seeking for food all the time. Tell ur friends and family I really want this to go to the white house barrak obama needs to hear us and help us out I know we can do it

William Flanagan • about 14 years ago

After 5 healthy grandchildren, we discovered our 6th has PWS
She is 6 months old and only has exhibited the traits of poor muscle tone - we have yet to experience what a lot of you have regarding the eating issues
We pray Maddie and all the children like her will see the end of this disease and if we pull together, we will!

susan aiello • about 14 years ago

My 6 byr.old Grandson has pws but was diagnosed @ birth.He is takiing growth hormones and hasnt started constant wanting to eat yet,and isnt overweight.We need a drug to help these pws patients to curb their appitite when it does kick in .One Small Step that a lot of us are involved in raising funds ,100% of all money goes to Research for a drug.Go to onesmallstep.fpwr.org/ to register or get involved with a walk,run near you or to even volunteer.This is our second year.

Linda Sotiriou • about 14 years ago

I am a grandmother (Nana) to my precious grandson who is 7 years old and was diagnosed at 3 weeks, he is a average boy going to Grade school with everyone else and he has Prader Willi Sydrome. He plays with all his classmates, gets invited to Birthday parties, has special lunches with his classmate with the supervision of an Educational Assistant.Dante knows the routine and its important not to sway from THE ROUTINE. With all his struggles and acheivements he has made so far in his short 7 years, we certainly must do our part. FUNDRAISING for Research is the answer and this is the break we have been waiting for, awareness at the WHITE HOUSE thanks to all who have supported this cause.

cyndi olivacz • about 14 years ago

Our family hosted a One SMALL Step walkathon in Maryland last August. We got the community together at a local park, had tons of fun, walked or ran the trail, and provided healthy snacks and beverages. Children (having PWS or not) walked with their families on a beautiful summer morning to support the need to eliminate obesity through education, awareness, and research. Children with PWS need to work extra hard to prevent obesity given they are born with slower metabolisms and a strong drive to eat, even when their tummies are already full.
Our son with PWS battles obesity every moment of everyday. We owe his current success to daily exercise and eating good quality foods. Our One SMALL Step walkathon was a blast and we will host another walkathon this summer. Thank you to everyone voting for this video. America's children can benefit greatly from the knowledge gained with understanding PWS.

Take One SMALL Step!!

WINNER: Exceptional Achievement

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