Blaise Major Owings wants Oprah to feature his cause
"Prader-Willi Syndrome"
on her show -- so that a cure can be found
for him and all the other children with this genetic disorder.
Please Oprah We need your voice.
Posted on 12/24/2009 8:32:50 AM PST by RonDog
Please watch this heart-rending video now posted on YouTube by a young mother who does not know where to turn:VIDEO: Blaise talks to Oprah About "Prader-Willi Syndrome" - only 187 views, so far...
Blaise Major Owings wants Oprah to feature his cause
"Prader-Willi Syndrome"
on her show -- so that a cure can be found
for him and all the other children with this genetic disorder.
Please Oprah We need your voice.
Help get Prader-Willi Syndrome on Oprah
On a mission to help raise awareness of Prader-Willi Syndrome World Wide through the Oprah show.
605 membersAnd, perhaps, appealing to Oprah will have some benefit for Blaise (and others like him) who suffer from "Prader-Willi syndrome" (PWS) -- a rare genetic disorder that causes (among other things) unregulated appetite, so that little guys like BLAISE (in this compelling YouTube video) are hungry all-day, every day -- no matter HOW MUCH they eat.But for those of you who believe in a HIGHER POWER......please lift up this child (and his mother) in your prayers!
Please watch this heart-rending video now posted on YouTube by a young mother who does not know where to turn:Here's more from Blaise's mom, from her Facebook page:VIDEO: Blaise talks to Oprah About "Prader-Willi Syndrome" - only 187 views, so far...
...I will not give up on raising awareness for PWS. I do this not only for my angel, but for the countless families the world over who live with PWS everyday. We are true champions and true warriors. We are tireless in our efforts to find a cure, to have hope, and to change the face of PWS.To know somebody with PWS is to love them. They are rich in spirit, compassion, humor and most of all extreme determination. They are the real champions! You only need to meet somebody with PWS to have them change your life. They will teach you hard work, discipline, joy, and most of all they WILL teach you how to love.
How can we just sit there while our children go hungry all-day everyday? How can we just sit there while our children beg us to live an independent life, but can’t for fear they might hurt themselves. We must do this for them!
If somebody told you that you would give birth to a child and they would be hungry all the time, but couldn’t eat, you would say they are crazy. Well, they aren’t and this is what the doctors have told all of us at one point in time. It is a struggle everyday to keep our angels out of harms way. We must find a cure. Although there is currently no cure early diagnosis offers tremendous benefit to our loved ones. Early diagnosis is the key to our angels living a much happier and healthier life. No child should be a late diagnosis, and yet still today hospitals across the globe don’t test for PWS. THIS MUST STOP. We have got to raise awareness to doctors, therapists, teachers, and communities as a whole.
I am here to share my voice; I am here to show my son to have courage and to be strong. My angel was put on this earth for a reason and together we will make a difference...
Prayer request PING!
My brother and my mother’s uncle both suffered from Prader-Willi, and both lived fairly long lives. I don’t know how old Uncle Brownie was when he passed, but he was older than my brother who died from Pneumonia at the age of 41.
Prader-Willi is a heartbreaker and requires constant monitoring of the individual to ensure they are taking the proper steps to keep themselves healthy.
My brother was a born-again Christian and I truly believe that was one of the things that helped him live a full life.
He survived two incidents of being run over by a truck and, IMHO, it could only have been due to divine intervention.
...An unregulated appetite characterizes the second stage of PWS.Just think how a young mother would feel, if her baby was ALWAYS HUNGRY -- but she could not let him eat...This stage most commonly begins between ages 2 and 6 years old. Individuals with PWS lack normal hunger and satiety cues.
They usually are not able to control their food intake and will overeat if not closely monitored.
Food seeking behaviors are very common...
Rachel's mother is a good friend of mine -- and naturally, their whole family is concerned about little Blaise -- but this has been PARTICULARLY hard on Rachel, as Blaise was her FIRST child.
...The hyperphagia (extreme unsatisfied drive to consume food) lasts throughout the lifetime.Children with PWS have sweet and loving personalities, but this phase is also characterized by increased appetite, weight control issues, and motor development delays along with some behavior problems and unique medical issues.
My brother was the third - but Mom knew something was wrong almost immediately. This was partially because of her experience with her Uncle.
Saying that a PWS child has an uncontrollable appetite skirts a very important issue. The child will eat absolutely anything - garbage, dirt, unmentionable stuff - to try to satisfy an insatiable appetite.
My heart goes out to Rachel and both of her boys. There is a risk the younger one will suffer from a necessary lack of attention, especially since Rachel is a single parent. I caught that right, didn’t I? She needs all the help she can get from family and friends to guard against that.
As for PWs being loving - they are as close to angels on Earth as we may ever come.
Another thing - it mentins that PWS is genetic - it skips generations and it is only manifested in males.
If Blaise or his brother have children, they are safe. The grandsons are not.
...There is a risk the younger one will suffer from a necessary lack of attention, especially since Rachel is a single parent.Ooops! No.I caught that right, didn’t I?
Rachel is VERY happliy married:
Saying that a PWS child has an uncontrollable appetite skirts a very important issue.Wow! I did not know that.The child will eat absolutely anything - garbage, dirt, unmentionable stuff - to try to satisfy an insatiable appetite...
And, thank you also for posting your thoughtful comment on YouTube!218 views, so far...
MERRY CHRISTMAS!
I am so glad I was wrong. A whole family will make all the difference to little Blaise.
As I posted there, although not many Oprah fans post here on Free Republic, I trust that concern for Blaise (and PWS) will be ABOVE any political differences.MERRY CHRISTMAS!
I am so glad I was wrong.You bet!A whole family will make all the difference to little Blaise.
And, Rachel also has a big, supportive EXTENDED family, too!
LOTS of caring relatives, and friends -- including many who only know about her and Blaise online.Thank God for the Internet!
Good people with big challenges need all the help they can get!
I would like to make a correction to one of the comments. Prader-Willi Syndrome effects both males and females. It develops in three ways. Two are very random with a deletion from the paternal or a duplication from the maternal on the fifteenth chromosome (they are not inherited) and the third is a mis-print on the fifteenth chromosome. The third one (mis-print) is the only one that can be inherited and it does not skip a generation. The first two happen randomly with no reason or cause. No one knows why any of them happen and there is no cure for Prader-Willi Syndrome. The children are now being treated with growth hormone to help with some of the medical problems but we need so much more research and a cure. Thank you for posting.
Thank God for the Internet!And, thank God that articles posted here on Free Republic are so "Google-friendly." :o )
CLICK HERE to see how widely this important message has spread -- via Google (and FR)-- so far!
As Rachel's mom -- and Blaise's grandmother -- you probably know more about the CURRENT state of PWS research than MOST people!I understand that more information is becoming available every day -- but there is still SO MUCH MORE that we do not (yet) know about this very rare condition.
How is Blaise doing? And, Rachel?
Not bad for a holiday, when many people who usually lurk here may be pre-occupied with OTHER things -- as I soon will be. :o)
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