The Early Years - A collection of articles regarding young children with Prader-Willi syndrome. "Lifelong and life threatening." I still remember the terror that I felt in my heart when I read those two descriptive phrases about the diagnosis that we had just received for our precious baby daughter, Erin. Prader-Willi syndrome – -whoever heard of Prader-Willi syndrome? This has got to be a mistake. Sure she’s weak. Sure she sleeps a lot. No, she doesn’t smile much but then she doesn’t cry much either. But how does all of that add up to lifelong and life threatening? I can accept "developmental delays" and I can live with that. Delay has to do with time and we have plenty of that. So where do they get off telling me about this Prader-Willi thing? The fear and anger and disbelief of receiving a diagnosis of Prader-Willi syndrome are still as vivid in my mind as they were the day the doctor called us with the test results. So much has changed since then, but the memories of that day will be with me forever. Going through the materials that the doctor gave me was as difficult as anything I have ever done. The picture that was painted by that information portrayed Erin’s future as being as black and dismal as could possibly be. If she were destined to have all of the problems on those lists, what point could there possibly be to her life? Since that time, I have spent countless hours researching the issues involved in PWS and talking with other parents, especially the parents of young children Due to early diagnosis and aggressive early intervention, I now know that I can expect a drastically different life for Erin than the one pictured by the original information that I received. Research is currently going on that could make major inroads into the medical and behavioral challenges that come with PWS. It doesn’t cancel the diagnosis or the issues she may face but knowing that certain things will probably be real challenges for her, I can set up a plan to meet each of these issues head on. This allows me to be proactive instead of reactive and greatly increases the chances that Erin’s life will be full, both of health and happiness. She deserves no less. This collection of articles is designed to help the families of young children with PWS see what is happening in the lives of other children who have also received early diagnosis. There’s no getting around the fact that PWS is a serious issue. But there are so many types of treatment available today that were not available even a few years ago that we cannot help but be optimistic about the future. By telling our stories, we hope to increase the awareness of the treatment options that are available. We want to share our joys and our pain. We want to reach out to others and be supported in return. Most of all, we want to say that there is hope, lots and lots of hope. Our stories attest to that and this is just the beginning. Together we will work to find solutions so that someday parents will not have to experience the chill of those descriptive phrases, "lifelong and life threatening." I truly believe that day will come. Rachel Whitler Tugon (Mother of Erin Tugon) To order, click on the Order Form button,  print out the Publications order form, fill it out and send it to the address printed on the form or call the National Office at 1-800-926-4797.

Table of Contents

Recommended Readings For Parents of Young Children

 

Recommendations For Health Care

excerpt from the Healthcare Guidelines for PWS

Diet and Nutrition: Feeding the Young Child with PWS

by Margie Morris, R.D.  University Hospital, The Milton S. Hershey Medical Center

Raising Awareness of the Latest in Genetic Testing for PWS

More on the Inherited Form of PWS

An Open Letter to Parents of Younger Children

by Amy Wissman

Ask the Parents: Coping with Questions

by Sue Ann Walker

Ask the Professionals:  Early Childhood Behavior

A Message of Hope for Families of Young Children

by Patty Johnson

Welcome to Holland

by Emily Perl Kingsley

Rising Above the Clouds

by Janalee Heinemann, Executive Director PWSA(USA)

A Snack Box Fills Independence Urge

by Judy Livny

Too Soon To Attend a PWSA Conference?

Not So Bad

by Amy Soncarty

My Journey Through PWS With Colleen

by Joanne McMaster

Twin Joys - and Movie Starts, to Boot

by Lisa Stover

Reflections On Our First Two Years With Prader-Willi Syndrome

by Rachel W. Tugon

Views From Our Shoes: Growing Up with a Brother or Sister with Special Needs

book review by Linda Keder

Lorielle's Essay...

A First Conference Experience: 'The beginning of some shared understanding'

by SueAnn and Lonnie Belknap

'What a Perfect Little Boy!'

by Tammy Davis

Our Own PW Poster Boy

by Lota Mitchell, M.S.W.

From the Home Front

by Vicki Knopf

The Early Years

by Cindy and Larry Armstrong

How Lucky To Be a Prader-Willi Parent

by Brian Norton

Elana - A Love Story

by Donna Hopper

Tending the Marriage Garden

by Janalee Heinemann

Being a Dad

by Mike Larson

Taking Charge Helps Conquer the Grief

by Ivy Boyle, M.D., parent

Take Me Out to the Ball Game

by Judy Livny

Speech and Language Issues in Prader-Willi Syndrome

by Cynthia Branson, M.A., CCC-SLP

Motor Development in young Children with PWS...Occupational Therapy as a Resource to Families

by Kay Kopp, OTR/L and Jennifer Shull, OTR/L

Food for Thought (and Vice Versa)

by Linda Keder

The First Time

by Brian Norton

Research Studies

Dental Health Problems in Prader-Willi Syndrome

by Kari Storhaug, D.D.S., Ph.D.