ABOUT RIDEN

When Riden was born on May 19, 2005, he was a beautiful baby who didn’t cry or want to eat - he just wanted to sleep. At two weeks old, Riden was diagnosed with Prader-Willi syndrome. Riden received a feeding tube in his tummy to supplement what he wouldn’t eat by mouth. After 30 days in the hospital, Riden was allowed to go home. He has worked with physical therapists, speech therapists and a dietician who have helped him grow stronger and hit most of his major milestones on time! Today, he is a smart, happy, loving little boy whose parents, Jessica and Tom, couldn’t imagine a world without him. They know they will likely face more challenges down the road because of PWS, and that is why they are so thankful for PWSA and support from people like you!

ABOUT PARKER

This is Parker (4) and little sister Amelia (2).  They are both smiley little girls living with the challenges Prader Willi syndrome brings to their lives every day.  Parker, a strong, intuitive, bright little girl with an infectious giggle, was diagnosed with PWS and discharged from the NICU at 4 weeks old.  She would struggle for the next 10 months to get enough food into her floppy little body by way of feeding tube.  “Enough food”, the very thing she will be restricted from for the rest of her life.  Parker has worked tirelessly with multiple therapists over the past 4 years and her diet and weight have been managed since 7 months of age, thanks to the brilliant and selfless direction of PWS specialists and PWSA.  Her hard work and progress have been truly inspiring, but her struggles will be many, the most difficult revolving around food.  Her brain never telling her she is full, her drive to feel full and her extreme anxiety about food, affect every aspect of her life.  Because this syndrome is so misunderstood, there are few who can comprehend that this little girl could eat quantities large enough to be life threatening.  But with your help, researchers can continue their work to find something to control her hunger, to give our little girl and so many others living with this syndrome a fuller, safer, more independent life.  By participating in events like these, we can educate our communities, our schools, our friends and those who may be struggling without a diagnosis.  Up to 70% of persons with PWS remain undiagnosed.  By spreading the word, we will see more early diagnosis and more opportunity to manage the weight and free these kids of life threatening obesity, until we find a cure.  Parker has touched the heart of so many in her four short years, we hope she finds her way into your heart as well.

ABOUT NOEL

Noël  is  our  beautiful  little  girl  with  curly  blonde hair.  She is younger sister to Nora and big sister to Baby Neil.  Noel  was born  with PWS  and  her  condition  affects  our daily  lives.  Hopefully with your support, we can find a cure for her hunger. 

ABOUT ANNA

Anna Kathryn is a sweet 7 year old girl who just happens to have Prader-Willi syndrome.  Anna is also a twin - her sister Kayla does not have
Prader-Willi but shares in Anna's struggles every day.  Kayla tells us all the time that Anna just "has a different way of being". It is not a
disability, it is a Possiblity and with help from you with events like this, you can help make Anna's future and all her other friends with
Prader-Willi a much brighter Possibility full of hope. Our children's future is brighter because of the help we receive through the research and support this event will help fund! Thank you!