Our Son Makes Everyone He Meets Feel Special

our-son-makes-everyone-he-meets-feel-special.jpgA special contribution by guest blogger Elizabeth DeSimone

Elizabeth shared her story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

When our son Vincent was born, we didn't know what was the future. He was read last rights and we were told he would be brain dead. What was suppose to be one of the happiest days of our lives quickly turned into the worst.

Well that is what we thought.

But seeing Vincent the ray of light that he is we can now laugh at what we were told. He is the most determined person we know he sets his mind to it and makes it happen. He is a social butterfly, has a contagious smile and makes everyone who he comes in contact with feel special.

Vincent plays soccer, softball, learning to surf and does karate. He may not be the fastest on the team or have the strongest kick but he tries and that is all we could have ever wanted. We wouldn't change a thing!

Who has helped you in your PWS journey?

We are lucky enough to be surrounded by loving and supporting family and friends. One person that stands out is my mother. I do not know what I would do with out her unconditonal love and support.

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

Take it day by day. Stay positive and do not dwell on what the future will bring. You will miss the pure joy of what is the present. Enjoy every minute and treat them as you treat any of your children.

PWS is something they have but it should define them!

What gives you hope for the future?

We are hopeful for so many reasons, but most of all because we have seen what he has accomplished already that we know his future is bright!

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

Life is a beautiful gift.

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.