There is Goodness and Hope Up Ahead

There is Goodness and Hope Up Ahead.jpgA special contribution by guest blogger Anna Beasley

Anna shared her story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

In so many different ways, she just keeps fighting. We weren't given a lot of hope at first, but to look at all she has done and is doing. It's amazing!!

Who has helped you in your PWS journey?

My husband, her sisters, friends and the whole family, really. We have been blessed to have such great support! We were also able to find an amazing group of doctors and medical staff that have provided us with so much more hope.

Describe a time you surprised yourself with your ability to do the impossible.

Every day I am more surprised with her than myself, she is the one fighting what seems impossible at times. She is what keeps me going!

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

Don't give up hope, while your child has this diagnosis, it's scary and real, but all children are different. Be patient and remember you are not alone. Remember it's OK to be sad and cry but enjoy the joyful moments. There will be so many more joyful times than sad.

What are you thankful for?

Her life, all the things she can do far outweigh the things she can't. We are blessed with wonderful children, and we are so thankful for every day with them.

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

That sometimes things don't go as planned, but that's OK because there is goodness and hope up ahead. So just keep loving and living!

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.”

For me, it means I had no clue how strong I was until having her. She is my strength; she fights, I fight.

 What does this quote mean to you?:

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

This is true sometimes, and it can be so hard to always have to explain to people that don't understand and are quick to give up on your child, but that's when you educate and keep fighting.

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.