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Foundation for Prader-Willi Blog | Stories of Hope (4)

Singing, Dancing, Changing the World: Our Mighty Girl With PWS

A special contribution by Noelle Scalzo Our story started out as so many others do with the dream of a "perfect" and "healthy" baby. We wanted to bring just one more tiny human into our world, a sibling for our now 4 year old Danica to play with and ...

Topics: Stories of Hope

The Nelson Family: Paving the Way for Schaaf-Yang Research

In 2014, when Emma Nelson was born, NICU staff told her parents, Kim and Justin, to prepare for the worst. But for the next two years, Emma had no diagnosis. Kim and Justin were directed from one specialist to the next trying to find answers to their...

Topics: Stories of Hope

Proud Brothers Cheer On Their Sister With PWS

A special contribution by Jessica Mitchell What did you feel when you first heard the words “Prader-Willi syndrome”? Did you feel sadness? Anger? Relief? If you were anything like me, you felt the “normal” slip right through your fingertips. You read...

Topics: Stories of Hope

'We Believe There Will Be Relief For Children With PWS': A Mom's Story

A special contribution by One SMALL Step host Samantha Kalasek Once upon a time, there was a "boy mom" blessed to be outnumbered. She believed she was living a very basic tale until she turned the page and realized it was actually a choose-your-own-a...

Topics: Stories of Hope

Your Child With PWS Can Have a Beautiful Life

A special contribution by guest blogger Loraine Hernandez Loraine shared her story via our Stories of Hope questionnaire. How has your child exceeded your expectations? With the horrible scenario at the hospital when she was born, I really didn't hav...

Topics: Stories of Hope

For This Dad, PWS Means Exceeding Expectations

A special contribution by guest blogger Blake Brenneman Blake shared his story via our Stories of Hope questionnaire.

Topics: Stories of Hope

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. Has your child exceeded your expectations? A million times yes! We were given a very low expectation for Tommy's future, but he is a wa...

Topics: Stories of Hope

Mom of Triplets Celebrates Son's Progress, Finds Hope In PWS Research

A special contribution by Lindsey Larson, Host of Live Life Full Lewistown, IL Being a first time mom is hard. Having triplets makes it even more challenging. Add to that a rare diagnosis, and it’s ... well, interesting is the only word that I can fi...

Topics: Stories of Hope

A Father's Story: Fighting the PWS Battle With Shared Love, Clear Vision

A special contribution by guest blogger, dad, and One Small Step host Adam Larson An expecting father has crystal clear vision. You are at the moment when all you will ever amount to is about to be tested. All of your talents will be called upon and ...

Topics: Stories of Hope

Mom Sees Past Obstacles of PWS to Find Hope In Research and Community

A special contribution by guest blogger and One SMALL Step Washington, DC, co-host Dominique Deleage Our son Charlie is now 10 years old. We found out that he had PWS when he was three weeks old. We had never heard of the disorder. I still remember t...

Topics: Stories of Hope