5/28/10

MUST READ: Prader-Willi Syndrome

For the next 4 days, every time you eat

imagine yourself NEVER feeling full...EVER! Even if you had 10 bowls of

your morning cereal. That sandwich for lunch? Makes no difference to

your hunger. Just imagine what it must feel like each time you eat and

Thank God you don't have to live that way. And help those that will

never get away from that hunger. Help us find a cure!

MAY IS PRADER-WILLI AWARENESS MONTH.



Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicity's. PWS is recognized as the most common genetic cause of life-threatening childhood obesity.

PWS affects 1 in 15,000 babies each year.  I keep repeating that statistic because it's one too many!  No one should have to live with PWS and as of now there is no known cure. 


I would like you to meet the Peden family and their 8 month old daughter Lillian.  This beautiful little girl was diagnosed with PWS and unless we all band together to help, she will not be able to live independently. Her parents are amazing people and have been speaking out about PWS since Lillian was diagnosed.  They have shown strength I would never be able to have and have handled this struggle with such dignity and grace, it's simply remarkable. Lillian's mom has a blog, click here to see what an amazing mother and fighter she has and is being for her daughter! Their goal is to raise awareness through their struggle, and if this blog post reaches even one person that wasn't aware of PWS, then I will consider this post a success.


I have two friends running on Lillian's behalf in a 10K in October and I am asking each and everyone one of my readers to click on the link below and donate even one dollar!  Each and every single dollar goes to PWS research so that children like Lillian can overcome this disease and we can find a cure!

Please, please, please click on this link and donate!  Remember this little girl and the struggle she has to endure each and everyday.  Giving up your morning latte tomorrow is worth the donation!


Give this sweet little girl hope

3 comments:

Amy said...

I have worked with kiddos with PWS so thank you for sharing. she is a beautiful little girl!

Sheila Adkins said...

I know the struggles of daily life all too well with a PWS infant, my baby girl was born on April 9, 2013 and was diagnosed on May 26, 2013. I just want to say thank you for takingyour time to help speak out for all of us who have these little PW angels!! Thanks again, Sheila Adkins sma2560@email.vccs.edu

Sheila Adkins said...

I want to say thanks for taking your time to speak about PWS, on 4-9-13 my baby girl was born and on 5-26-13 she was diagnosed with PWS. I know the daily struggles with an infant that doesn't eat well on her own and to think one day she wont want to stop is hard for me to believe! But I pray everyday for a cure or a miracle from God to help my little PW angel!! Thanks a bunch, Sheila

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