Foundation for Prader-Willi Blog | Stories of Hope

Your Child Is So Much More Than a PWS Diagnosis

A special contribution by guest blogger Melissa Demand

Melissa shared her story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

We were lucky that in NICU and through our geneticist, we only heard about what he wouldn’t be able to do physically. They really had no idea what was going on. He was so small and weak. Every day we’d concentrate on how much he ate or doing his physical therapy exercises. We didn’t know what would happen when we left that hospital. We didn’t have a PWS diagnosis.

It wasn’t until Kemett was 3 months old that we found out he had PWS. We were relieved that this was what is was, compared to other diagnoses it could have been. Kemett is an amazing boy. He is only 3½, but he is so smart, loves to read, is funny, loving and kind. He goes to a typical preschool and is keeping up with his peers — sometimes is even faster than them. We are so proud of the person he is becoming.

Topics: Stories of Hope

Your Child Can and Will Have Successes You Can Barely Imagine

A special contribution by guest blogger Dan Yashinsky

Dan shared his story via our Stories of Hope questionnaire.

Topics: Stories of Hope

What I Wish They Had Told Me About PWS

A special contribution by guest blogger Amber Rector

The day I found out I was pregnant, I imagined myself carrying to term, pushing out a healthy baby and going home the standard two to three days later. I would arrive home with my new bundle of joy, and we would adjust to life as a family of three. My complaints would focus on sleep deprivation and diaper blow-outs.

None of that happened.

Topics: Stories of Hope

Don't Worry About the Small Stuff and Be Patient

A special contribution by guest blogger Teri Douglas

Teri shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

There is Goodness and Hope Up Ahead

A 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.

Topics: Stories of Hope

Everything and More: A Father's Journey Into the World of PWS

A special contribution by guest blogger Tony Chambers

When I was 10 years old, I realized I was never going to see my dad again. He didn’t die, he just packed up and disappeared one day. I was 4 when my mom knocked on his empty apartment door wondering why he didn’t pick me up from daycare. I guess it took me a few years to realize what was going on. I grew up with everyone else’s dad and with my grandfather, who from a distance, had a huge impact as a male figure in my life. This is important to understand when it comes to being Daniel’s father.

Topics: Stories of Hope

How One Family Turned March Madness into PWS Awareness

Nikol Maher, mom to Jack, turned her fear into determination using the family's love of sports.

Tell us about your family and how you connected to FPWR.

Jack was diagnosed with PWS when he was 3 weeks old. The news devastated our family and we could not begin to explain how fearful we were for our sweet boy. In that moment, we were overwhelmed by all of the medical procedures, terminology, and services Jack needed. As we waded through this new life, we needed something to give us hope. Jack is lucky to have a big, supportive extended family who adore him. Within 6 months, his aunts and uncles decided to start a fundraiser to raise money that we could donate to FPWR.

We knew that Jack's future depended on the crucial research that FPWR was funding and we were determined to do whatever we could to support them.

Topics: Stories of Hope

Harvesting Hope for PWS: Rachael Fischer and Julie Foge

While most of us spent this last Thanksgiving morning prepping a feast, watching football or entertaining family, Rachael Fischer and Julie Foge rose before the sun to host more than 850 runners for the 2nd annual Harvesting Hope 5K race.

The event took place in Stapleton, a suburb of Denver, and drew participants from 15 states! This incredible effort raised more than $50,000, and a whole lot of awareness, for Prader-Willi syndrome research.


Topics: Stories of Hope

The Changing Force of My Daughter's Future ... Me

A special contribution by guest blogger Gwyn Spearman

It starts with one SMALL step...

That sums up our approach to dealing with our "new normal." We have taken small steps, toward big dreams, goals, hopes, and expectations for Ellie. First, we navigated the diagnosis. We researched. We connected with other families. We became involved with the Foundation for Prader-Willi Research. We learned to advocate and educate. We hosted our first event called One SMALL Step. And, we haven't looked back.  

This picture reminds me of so many things. I love it for how strong Ellie looks sitting up all by herself. Sitting took lots of hard work and determination on her part. She looks so confident in this picture, and proud of herself.  

Topics: Stories of Hope

Dream, Believe, Achieve

I’m a mom so you know my memory is full of as many holes as Swiss cheese. I can’t remember much of anything that took place more than 5 years ago. On particularly fine days, I may be lucky to remember something that was said within the past 5 minutes … but there is one event that remains as clear to me today as it was nearly 8 years ago….

Topics: Stories of Hope

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