Prader-Willi Syndrome
Prader–Willi Syndrome is a rare genetic disorder in which seven genes (or some subset thereof) on chromosome 15 are deleted or unexpressed on the paternal chromosome, resulting in low muscle tone, short stature, incomplete sexual development, cognitive disabilities, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity.
Featured Child
This is Violet
For Violet, Prader-Willi Syndrome impacts everything from family and social relationships to education to her own self-image.
Featured Articles for Prader-Willi
Finding the Right Out-of-Home Placement for Your Child with Prader-Willi Syndrome
Finding the right placement for your child with Prader-Willi Syndrome can be difficult. You may go through numerous homes before you find the one that is a fit for your child and that can help him or her in the best way possible. Read how one parent never gave up and sought out the help that she knew her child needed, in an environment that worked for him!
Children with Prader-Willi Syndrome: Impulse Control Issues and Dishonesty
When the lies about food become too much to handle, there might be another factor at play. Follow along as Ben's struggles with food are taken to the next level and begin to become more than his parents can manage alone.
I'm Just Hungry
Last year, Chelsea McCutchin worked on an MyPath Library book about Prader-Willi syndrome and was inspired by the beauty and the pain of those who suffer with this fascinating disorder. Here, Chelsea expresses what it feels like to be caught inside of PW through a poem called a sestina.
Latest Articles for Prader-Willi
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Treatment for Mental Health and Addiction Finally Gets a Level Playing Field
Written By: Christine Walker
Christine Walker, author of Chasing Hope, was on hand last week for the announcement that the White House would issue the final rules to the Mental Health And Addiction Parity Act of 2008. Thirty-Three years overdue, this change will have a momentous impact on the lives of those sufferering from mental illness and addiction.
Parents of Special Needs Children Need to Ask Tough Financial Questions
Written By: Christine Walker, Pamela DeLoatch
Many parents of kids with special needs are so busy planning for the present that they neglect to plan for their child's financial future. But the best time to take a look at this is as soon as you know your child will need additional care. Find out some of the hard questions they should answer as they plan for the future.
Loving Your Child—No Matter What They Do
Written By: Pamela DeLoatch | Resource Creation By: Leeann Sanders | Illustrations By: Nathan Lueth | Design By: Sunny DiMartino
There are countless books on parenting, but nothing fully prepares you to be the parent of YOUR child. Every child is different, every situation is different, and every day can be different than the last. For parents of children with special needs, this is surely the case. There is no manual for how to handle meltdowns, rage episodes, and aggressive behavior and there is no clear cut answer to how you should FEEL about your children during these times of struggle.
Choosing Out-of-Home Care for Your Child with Prader-Willi Syndrome
Written By: Alison Hennessee | Resource Creation By: Bridget Morton | Designed By: Sunny DiMartino, Christy Bui, Nathan Lueth
It's only normal for parents to want to be everything to their children. That's a tall order for any parent, but when your child has Prader Willi Syndrome, "everything" is more than any one person can be. Read about how one parent learned that letting experts help manage his son's disorder give him the chance to focus on being a father.
Feeling Guilty When Raising a Child With Special Needs
Written By: Pamela DeLoatch | Resource Creation By: Keli McNeill | Design By: Sunny DiMartino
Parents are often their own toughest critics. When the idyllic picture of what we thought our family would look like is a stark contrast to what the reality is, we add on even more stress by feeling guilty about what we did or didn't do in a a sea of very complex situations. For parents of special needs children, these instances are magnified, but they are recurring thoughts of every parent, nearly every day. Break the cycle of guilt for your sake and for the sake of your child.
Residential Care: A Story of Love and Caring for a Traumatized Daughter
Written By: Lizzie Vance, Aleksandra Corwin | Resource Creation By: Leeann Sanders | Designed By: Sunny DiMartino, Christy Bui
After years of rages and fighting, Lori Hetzel’s adopted daughter’s behavior, diagnosed as Reactive Attachment Disorder, turns in a dangerous direction, leading the family to consider options for her care they have never wanted to consider until now. Nadya’s extreme emotionality, aggressive reactivity, and unpredictability has left the family with no good, safe options for keeping her at home.