Believe in Yourself and Believe in Your Child

Believe in Yourself and Believe in Your Child.jpgA special contribution by guest blogger Lisa Miller

Lisa shared her story via our Stories of Hope questionnaire.

What would you say to a parent whose child has recently been diagnosed with PWS?

Our son is 5 now, but I remember the dark diagnosis days so well. The first year is the hardest, but it gets easier. You may feel overwhelmed and feel an intense pressure that you have to do everything "right."

Do your best, certainly, but do what works best for YOU and YOUR family. There is more than one way to do something right. What works for one child and one family may or may not work for you. It will take some trial and error. Your child is still an individual with their own strengths and weaknesses. Trust yourself and your own parental instincts!

PWS will be a part of your life now, but it does not have to take over your whole entire life. You will still be happy and live your normal life, but you will find a new normal. Keep your expectations high, but prepare yourself for anything. Even though you may do everything "right," your child may still struggle in one area or another. Give yourself some grace. Try not to compare your child to anyone but the progress that they make themselves.

Stay positive and optimistic and focus on the good! It can be a bittersweet road, but your child will bring you more joy than you can imagine! Believe in yourself and believe in your child. NEVER give up your hope! You got this!!!

Do you have a story of hope to share with others about your experiences with PWS? Send it to us! 

Understanding PWS - Slide Deck

Topics: Stories of Hope

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.