Anne Taylor • about 14 years ago

I agree that there should ONLY be positive messages on this board. We are all fighting for a greater cause and need to keep that in mind always. If you want to vote for another video, do it and if you dont, don't but always keep the comments positive. Rememebr you don't know the struggles of people until you have walked a day in their shoes.

The PWS community is awesome and I dont know where I would be today without them! Thank you so much for the love and support!

Nina Donato Roberto • about 14 years ago

Mommy, I'm Hungry!!!"
By Nina Roberto

Most parents are elated to hear these words come from their child’s lips, for food is what helps our children grow and develop. When my son tells me that he’s hungry, it breaks my heart. He can’t eat as much nor can he ever feel full like other children do after a meal because he has a birth defect called Prader-Willi syndrome, (PWS). Having a child with special needs turns your life upside down. Worries, concerns, fears, all come to mind. You think to yourself…”What is this? How could it be? Why?” We dig down deep to the root of our souls and reach for the strength we never knew we had. Our quest to give our child the best quality of life becomes the ultimate goal…what we live for. It seems as though nothing else exists. Prader-Willi syndrome is a life threatening chromosomal disorder that affects 1 in 15,000. Children with PWS have an uncontrolled genetic drive to eat because their brain sends signals to them that they are constantly hungry and run the risk of eating themselves to death. Babies with PWS are born with failure to thrive, are hypotonic, (floppy), have small genitals, small hands and feet, almond shaped eyes, thick viscous saliva, some with hypopigmentation, (very fair skin), undecended testicles and have very poor suck reflex. They do not grow normally, therefore, growth hormone shots are given daily. They will need Early Intervention immediately after birth, and will probably never be able to live on their own. Between 2-3 years old, nutrition becomes key. They may need to begin a low fat low calorie diet for the rest of their lives and may not have a typical life expectancy. They also have some health issues attributed to the syndrome, decreased sensitivity to pain and skin picking.
Severino, (Sonny), was born on March 20, 2002 weighing 7.12 lbs and 22 inches long. My pregnancy was uneventful yet I noticed towards the end, there was decreased fetal movement. I had an extensive biophysical profile and the doctors told me that I was going to have a normal healthy baby. In my 8th month of pregnancy, he wasn’t moving. I prayed to God and from that moment, dedicated my baby to him and said to him that I will accept whatever he gives me. I knew there was something wrong. I felt Severino kick ever so lightly and just cried.
The day came. He was born via c-section. When the doctor took him out, He didn’t cry right away. I heard them patting him to get him to cry. I finally heard the sweetest little cry that sounded like a tiny kitten come from him. They brought him to me and I gave him a kiss. He was blue from lack of oxygen. I went into recovery and my husband comes and tells me that there’s a problem with the baby, he was admitted into the NICU. Because of his small genitalia they didn’t know if he was a boy or a girl. He was having difficulty breathing, couldn’t move or eat on his own. There were monitors and tubes where I never thought could be placed. My world came tumbling down. After 9 months of carrying him, no one could tell me if he was going to live or die. He was diagnosed with Prader-Willi Syndrome after 10 days and was discharged after 16 days with a CPAP machine, pulse oximeter, apnea monitor and oxygen. They taught my husband and me how to insert his feeding tube, and gave us and a quick class in child CPR. Sonny never cried or fussed, ironically, not even to eat. Because of this, the first year is considered a failure to thrive period. I would have to set my alarm for every 3 hours to tube feed him.

Sonny’s breathing was unstable and he needed oxygen frequently. At 2 months, he was diagnosed with tracheo laryngomalasia, which means the tissue above the vocal chords lack muscle tone and sags inward obstructing the airway. His doctor performed a Supraglottoplasty, (partial removal of extra tissue around the epiglottis), at 9 months because he was requiring more oxygen, placed tubes in his ears, and did a bronchoscopy. We found out that Sonny had pneumonia. The results of the surgery lasted 1 week. We would ultimately have to do it again 4 more times. Within this week, he developed a critical stomach virus with 104.7 fever, and was hospitalized for 5 days. Sonny has had 12 surgeries for undecended testicles, strabismus, removal of his tonsils and adenoids twice because the tonsils grew back, and three tear duct probings due to eye infections, to name a few. Sonny also suffered from obstructive sleep apnea which lead to an immediate tonsil and adenoid removal when he was 2. About 12 hrs post op, his lungs began to fill with fluid, his oxygen saturation went down to the 60’s, and was rushed to the PICU. He was in respiratory failure and developed pulmonary edema. He needed to be sedated because he was screaming, crying and wailing because he wasn’t able to breathe. His oxygen saturation went as low as the 30’s so the Chief of the PICU, had to bag him until respiratory got there to place him on BiPAP, which didn’t work. They cracked open the crash cart, continued bagging him, administering all kinds of medications as we waited for the anesthesiologist to come and intubate him. My husband and I just cried in each other’s arms. Sonny was intubated for 2 days. I read to him, massaged, kissed and told him how much I loved him every moment I could. He looked so helpless and this was how I felt. The day after he was taken off the respirator, we took him home. Because of Sonny’s experience, the protocol now at Sonny’s hospital is that when a child with PWS has a tonsil and adenoid removal, these children need to be directly admitted to the PICU, not a regular pediatric floor.

Our nights consisted of monitors going off and dozens of trips to the Emergency room. Sonny acquired pneumonia 20 more times and now has Reactive Airway Disease, Asthma and Chronic Lung Disease. He became reliant on oxygen for the first 18 months of his life. In February, 2005, Sonny was diagnosed with gastroparesis, (a life threatening stomach-emptying problem). He’s been hospitalized twice for this. He has had his 5th and final Supraglottoplasty in 2005. One year,he was hospitalized 2 times within 6 weeks. Once for gastroparesis and the other for pneumonia. He also has a seizure disorder.. Severino keeps us on our toes yet we love him to no end and couldn’t see our lives without him.
Not all children go or have gone through what Sonny has. Many times, children are born with minimal or no obvious distinguishing features so they go undiagnosed or misdiagnosed which is why awareness is so vital. It’s about learning about the syndrome to properly diagnose these children as soon as possible to avoid becoming overweight, acquire medical problems associated with the syndrome and die. There is no cure for PWS, but my hope is that research will find a cure to control the painful hunger which is the biggest obstacle these children face. This is such a serious syndrome that more people are thankfully becoming aware of. The “New Generation” of children with PWS are reaping the benefits of early diagnosis, early intervention, growth hormone, and learning about PWS in a 21st Century way and for that, I'm greatful.

Betty Meunier • about 14 years ago

Mark G - congratulations on the wonderful response written a few days ago. Let's continue to hope and pray that this "one small step" soon leads to much bigger ones with research and a cure.

Bob Bojunk • about 14 years ago

My 3 year old niece has PWS. I love her more than life itself. She is the most precious child and I would give my life for her. To see other people stand up and advocate for her brings me to tears. There really is strength in numbers and with this loving supportive community we can and will make a difference for all children and adults living with PWS! Thank you all.

George Varndell • about 14 years ago

Bob B,

"love her more than life itself" -- PWS children will do that to you.
They are a special breed of angel.

Joe Olivacz • about 14 years ago

I’d like to commend all the great comments made by fellow parents, relatives and advocates. As a parent of a 4 year old child with PWS, I am so proud of our group!

The Foundation for Prader-Willi Research (FPWR) is not only advocating healthy eating and exercise but also looking at the underlying mechanisms of obesity in the laboratory as well. We are hitting obesity from both ends – diet/exercise and research. Unfortunately, our foods have been altered and modified in recent years and therefore research is necessary to better understand hunger and metabolism.

As a health care provider, I have no doubt in my mind that if people ate and exercised like people with PWS, we would be a much healthier country. For Americans who have been injured or afflicted with a condition that leaves them in a state where they cannot exercise, it would be nice to have the knowledge through the advancement of research to combat disturbances in metabolism and the physiological drive to eat.

George Varndell • about 14 years ago

One day left folks. We're doing great but please don't be complacent. Vote. Remind friends and family to vote. Ask people on the street to vote.

Martha Planton • about 14 years ago

There is such a need to educate about PWS and for our country's medical research to be funded!

susan barrows • about 14 years ago

My daughter Lizzy who was 23 had PWS and passed away unexpectedly October 26 2011. She was the most wonderful god loving beautiful child a mother could ask for. She was a part of many research studies through Dr. Driscoll at Shands Hospital. She is my inspiration and I pray we win this challange! WE NEED A CURE!!!!!

joyce opp • about 14 years ago

I want the organizers of this challenge to know that it has inspired me to host the first annual "Danny's Danceathon" for the Foundation for Prader Willi Research! This will be my first OneSmallStep event and I am soooo very happy that watching all of these videos gave me the idea that I know will serve so many of my goals with this event. Danny attends regular school since Kindergarten and his "typical" classmates are sooo kind to him that I wanted to host a FUN event that they could get involved in and that I could use to show them that their kindness to my little Danny is no small thing! I really couldn't do a "walk", Danny has such low tone, it takes us five minutes to check the mail, but he LOVES to dance, so that is a healthy way to host this event AND make it fun. Thank you to First Lady Obama and the Challengepost team!!!!!

Peter Vario • about 14 years ago

I am so excited to host a "One Small Step" walk! Not only does it support a wonderful and amazing cause. It also supports healthy activities and shows others by leading by example. Children with PWS must eat healthy and exercise to survive. There's no better role model for the everyday person than someone who has PWS. They inspire people to make better eating and lifestyle choices. It is a win-win situation. I vote for One Small Step because they are helping to change lives one step at a time! Thank you!

Hilary Wheeler • about 14 years ago

My daughter, has Prader-Willi Syndrome! Imagine NEVER feeling full after eating, even if you had 10 bowls of cereal or a 5 course meal. Nothing EVER satisfies the hunger. Imagine a gnawing hunger in the pit of your belly 24/7. This horrible hunger is the main problem associated with Prader-Willi Syndrome. MAY IS PRADER-WILLI AWARENESS MONTH and I have just made you aware. Help us find a cure so my baby girl and others dont have to be hungry any more.

Veronica Child • about 14 years ago

My daughter is the spectacular Miss Vanessa C!!! Some of you posting on here may know her from facebook or chatting with her online. If you're one of those people, you know she ROCKS!!! For those of you that don't know V, I kinda feel bad. She is 23yo. She's intelligent, compassionate, funny, insightful, passionate, firm in her beliefs and embraces her life wholeheartedly...oh, and she has PWS. For those of you with loved ones that have PWS, I love you and I know.. For those of you that have never met someone with PWS, I highly recommend it. It can be one of the most eye-opening experiences.
I'd like to say thank you from the bottom of my heart to the people who created/entered this video and to the people who have been incredibly awesome by voting. I'd also like to take a moment and say that Vanessa has been pushing this video tenaciously...yes, I had to have a talk with her about how to tailor her posts on facebook so as not to sound pushy and things have been fine since. She is so wrapped up in this video winning that come tomorrow she might just explode from happiness if it does wins. I have to admit...I'm pretty @#$% excited too!!!
PWS awareness is so important. I can't imagine what it would be like to walk into a doctor's office and NOT have to explain what PWS is. And the thought of a cure is just indescribable. Let's go people!!! Share the link and ask your loved ones to vote!!! We will be heard!!!

wendy roberts • about 14 years ago

Woo final count down. Keeping fingers crossed and hoping you guys win.

Michelle Herman • about 14 years ago

I voted everyday for my beautiful godchild Emma! I am so happy to see all the support for PWS and hopefully this will raise some well needed awareness for this rare syndrome and bring us closer to finding a cure.

Emma Hill • about 14 years ago

Glad to see that PWS is still leading the field - what a great way to spread awareness and ensure that the profile of this syndrome is raised. KEEP VOTING!

Kathy Slabaugh • about 14 years ago

Never Ever Give Up!

marsha bennett • about 14 years ago

GO GO were almost there, this is for my grandson Benjamin and all
of the other beautiful PWS kids over around the world

Janis Williams • almost 14 years ago

I just wanted to tell Veronica that she has done a wonderful job raising Vanessa. Audrianna and I skype with Vanessa and we love her dearly. Good job mom.

Carole Elkhal • almost 14 years ago

Giulianna, mommy loves you... When you where born i sang in the NICU that you are my sunshine. When you where 1 yr old I hosted a Gala to raise funds for PWS. And now, I voted and I urged family and friends to vote so that we can spread awareness and help Mrs Obama find ambasadors agaist obesity. Ain't no mountain high enough my love!!!to the moon and back... For you! And all kids that suffer from obesity: with or without PWS. Xxxxxxxxxxx

Richard Baehr • almost 14 years ago

Hello All we did it congratulations we are headed to the White House
Let me introduce my self My name is Richard dad to Raymond 6 yrs old with PWS We had just returned back to Long Island NY from Philadelphia where Raymond had undergone Scoliosis Surgery at Shriners Hospital for Children. (Dr. Harold Van Bosse) (Highly recommended) Although the surgery was successful Raymond has a long road to recovery and an even longer road with the battle or PWS (the biggest leading cause of childhood obesity, Low Muscle tone, developmental and cognitive delays, poor speech, short stature, low teeth enamel etc. I personally want to Thank Vanessa C. for introducing me to this group. Thank you.
I entered my son Raymond into a contest to win an Adaptive bike
the top 14 with the highest votes will win a bike and another 4 will will as the directors choice. May I ask you all to please vote for my little Raymond to help him win one of these very expensive bikes
not only will it help him with his Post OP PT but will also help him with his low muscle tone and just the enjoyment of riding a bike which he has a hard time doing on a conventional bike please click the link below and hit F5 to do a search on Prader Willi - Or Ray Baehr I think but am not positive he is the only one in the contest with PWS thanks in advance
Richard B
http://www.facebook.com/FCMichigan?v=app_248518978578050&app_data=entry_id%3D5257550

Vassa Blandizzi • almost 14 years ago

Hi Richard. Read your post and will try and vote everyday for your Raymond. I wish every child could win but that is often not possible. You may want people who will vote to look for your name as well because he is hard to find in the list of applicants. Good luck.

barb farmer • almost 14 years ago

how do i vote?

barb farmer • almost 14 years ago

how do i vote? my daughter has this syndrome

Robert Schoenberger • almost 14 years ago

To "barb f" the voting was over May 11 and BTW due to the commitment of the PWS Global Community of Families we won the contest with the most votes but that has to be verified by the organization and we will not know officially until June. Read the comments there is a wealth of information and help available to you and web sites or just ask because these are all very caring people. Kudos again to this community of dedicated people searching for solutions for their loved ones that could also be of great benefit and help to the general population fighting obesity and that I am so proud to be a part of.

Take One SMALL Step!!

WINNER: Exceptional Achievement

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