Putt for PWS
in 2011
Our children with PWS
ABOUT CHARLIE
Charlie (on the right) is now 4-1/2 years old. He is getting more social as he grows and particularly likes to play with his brothers Alexandre (middle) and Leo (left). His communication skills are improving, and he is starting to use a picture system to let us know what he wants. His understanding is getting really good too. Charlie is also an increasingly good climber, and still enjoys music any time of day. His favorite toy is keys (don't be surprised if he goes through your pockets to find yours!!).
But Charlie now faces more and more challenges too. It is obvious that insatiable hunger has set in, and we have had to start locking our refrigerator and pantry. He is also exhibiting more and more obsessive-compulsive behaviors.
This fundraiser is our way of helping PWSA help him have a better and brighter future, and we hope you will join us in achieving that goal. Thank you for supporting us year after year!
ABOUT MATTHEW
Matthew was born in 2007 and within 10 days we were told of his PWS diagnosis. At 4 ½, he is a funny, loving boy who loves to swim, dance, and lip sync. His food pressure is in full swing, which results in more tantrums, but we do our best to be consistent and make healthy food choices. It’s not always easy and we thank our family and friends who have supported Matthew in making the best choices—especially his sister. Matthew has made great progress with expressive language through therapy, and he certainly manages to communicate quite well even without clear words. He is known for giving the best hugs. His entire family thanks you for your participation in working towards keeping his future bright.
ABOUT GINNY
At first glance Ginny looks just like her friends at school- a typical, happy six-year-old girl. But unlike her peers, she deals daily with the challenges of PWS: constant hunger all the time-no matter how much food she eats, low muscle tone that makes it hard for her to speak clearly and keep up; the inability to get a good night's sleep, doctors appointments and therapy sessons. The list goes on. Despite these challenges she is the most caring, inspiring little girl you will ever meet and she overcomes the obstacles thrown at her with huge determination and a simple joy for life. We are very appreciative of your support of Ginny and of all people and families living with Prader-Willi Syndrome. Thank you!
ABOUT RIDEN
When Riden was born in 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. While spending his first month of life in the hospital, Riden received a feeding tube in his tummy to supplement what he wouldn’t eat by mouth. He has worked with physical and speech therapists, dieticians, teaching aides and too many doctors to count to help him grow stronger and hit most of his major milestones on time! Today, he is a smart, happy, loving little boy starting Pre-K whose parents, Jessica and Tom, and little brother, Cole, 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 NOEL 
Noel is our wonderful 6 year old daughter who was born with Prader-Willi Syndrome. You’ll never meet someone with a bigger heart or more enthusiasm for life than her. She leaves an impression on almost everyone she meets. Who else has the clerk at the local grocery store buy them a birthday gift? Noel does. Noel will be entering 1st grade in the fall and has many friends at school. As she grows, our family grows too. We appreciate all of her accomplishments but at the same time we now have to deal with more difficult aspects of her syndrome. Our family is hoping that your support will lead to medical advances that will help us give Noel a better life. Thank you for your support.
ABOUT PARKER
This is Parker (5) and little sister Amelia (3). 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.
