Look for What is Good, Not What is Wrong

Look at what is good, not what is wrong.jpgA special contribution by guest blogger Jeanne Huffman

Jeanne shared her story via our Stories of Hope questionnaire.

Who has helped you in your PWS journey?

My son and daughter-in-law, Tony and Katy Chambers. They have always been available to answer my questions about my grandson, Daniel, about his eating regimen, his physical health issues, etc. I have gone to PWS websites to gain information or have questions answered about a specific issue. Mainly about hyperphagia. I have followed the study on the medicine oxytocin in hopes that it becomes a way to help all PWS patients. To me, knowledge is power.

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

Go to the PWS websites to gain current information; get on Facebook to learn of other families' trials and successes; get involved with any type of support group either locally or through social media. I also share my story of being a grandmother of a PWS child and what that child has taught me since his birth. I speak with happiness and encourage them to learn all the resources available to them.

What gives you hope for the future?

The current studies and possible medical progress in helping PWS children with hyperphagia. No matter what the situation or the challenge before me, I feel there is always hope!

What are you thankful for?

I am thankful for the Foundation for Prader-Willi Research. I am thankful for my grandson Daniel Chambers. My grandson keeps me humble on a daily basis. I am thankful for the solid foundation that my son and daughter-in-law have created and set to give Daniel every opportunity for a happy and healthy life despite the challenges that face him. I am thankful for being able to participate in Daniel's annual Fun Run events to raise awareness and money for research. I am thankful for many things in life ... God, family, and then everything else. I am thankful that my grandson can hug me and tell me he loves me. He warms my heart and keeps me humble. I have gratitude that never ends.

What positive life lessons have you learned from having a child with PWS?

Lessons learned ... my grandson proves that there is joy in each day despite having PWS; lesson learned, that I have remained teachable; lesson learned: that there is strength within me that I did not know I had; lesson learned, that I have been taught by another PWS child that I can live life to the fullest no matter what I am challenged with.

What does this quote mean to you?:

“Until you have a kid with special needs, you have no idea of the depth of your strength, tenacity and resourcefulness.”

My daughter-in-law wrote a daily journal during Prader-Willi Syndrome Awareness month this past May 2016 and posted her daily story on Facebook. Her story was so moving that the above quote is defined by her in her compelling story.

What does this quote mean to you?:

“Most people see what is, and never see what can be.”

Many people's perception of "what is" is what's in front of them. Until one experiences having a specific and/or special challenge through another person, do they see beyond "what is." Then it becomes "what can be." Look for what is good, not what is wrong.

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.