Mom's Message to PWS Parents: Pride and Love Will Fill Your Heart

A special contribution by guest blogger Laura Capone

Laura shared her story via our Stories of Hope questionnaire.

moms-message-to-pws-parents-pride-and-love-will-fill-your-heart.jpgHas your child exceeded your expectations?

A million times yes! We were given a very low expectation for Tommy's future, but he is a walking, talking, hilarious and smart boy.

Who has helped you in your PWS journey?

Family and friends. But we would have been lost without the online PWS community and are so lucky to have developed some really close relationships.

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

I would say congratulations! You were just given a child that will surprise you and change you in the best way possible. The amount of pride and love you will feel as they accomplish their goals will fill your heart. They will be a typical child and you won't believe you ever doubted that when you were given the diagnosis.

What gives you hope for the future?

Research and Dr. Miller! Also, the passion from the PWS community and their will to change the lives of their children and others.

What are you thankful for?

I am thankful for hope. I know my child's future is not written in an outdated text book, and he will do great things.

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.”

When your child has special needs, you are their advocate. Unfortunately, you have to fight for everything from medicine and insurance companies to therapy services and school accommodations. It is not easy, but you do what you have to do to get your child what they need to be successful.

What does this quote mean to you?:

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

To me this means how thankful I am that I was given hope early on so I could easily see what could be and not get stuck seeing the grim picture that was painted for me in the NICU.

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

Never give up, and keep pushing even if you think something seems impossible.


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.