I Turn to PWS Research for Hope, and to Other PWS Moms for Help

A special contribution by guest blogger Maegan Richard

Maegan shared her story via our Stories of Hope questionnaire.

i-turn-to-pws-research-for-hope-and-to-other-pws-moms-for-help.jpgHow has your child exceeded your expectations?

When Cade was born, he was so lifeless and fragile. He kept the doctors on their toes and frazzled as to what was going on with him. When we finally got the diagnosis of Prader-Willi Syndrome at 4 weeks old and met with the local geneticist, he didn't give us much hope, or much any information, really...other than the struggles he'd face.

He was right to some degree, we have faced and currently face various struggles, but we have gotten so much more from Cade. He loves with every bone in his body and is the most genuine little boy you'll ever meet. I've always had high expectations for Cade and continue to, but one thing he has definitely exceeded as far as my expectations go is the ability to be happy. His happiness makes everyone who comes in contact with him smile!

Who has helped you in your PWS journey?

So many people. My local community has helped in big ways for our annual 5K event by helping fund research and raise awareness. My family has been super supportive, and most of them seem to really "get it." Last but not least, my fellow PWS moms of older children who have been there for me and schooled me through this journey and are now some of my very best friends.

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

I ran a half-marathon this February and for sure never thought I could do it. I wanted to quit so many times during training, but I pushed through. Race day was tough, too, as I was nursing an injury, and I was running on no sleep the night before due to adrenaline. But race day came and I did it! 

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

Enjoy your baby and know that their future is bright. Don't be afraid to reach out and ask for help; great resources exist, and there is always someone who has been through your situation before to help guide you.

What gives you hope for the future?

My hope lies in all the amazing research plans that are ongoing and are yielding fabulous results!

What are you thankful for?

I am thankful for plenty, but especially to the amazing scientists and doctors who are interested in PWS and more so, interested in helping my child lead a less restrictive life. The famous Dr. Miller, who is always only an e-mail away!

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

I have learned the necessity for routine, structure, and a healthy diet. Cade keeps me organized, on task, and I am healthier because of him. Our family has also grown together with a new respect for differences and can love unconditionally.

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.”

It is true, I've learned so much about myself through this journey and I've had to really step up and out of my comfort zone on several occasions. It has made me stronger and who I am today.

What does this quote mean to you?:

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

For me it means most people don't look beyond that initial assumption, and so much more is to be discovered beyond the surface.

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.