Foundation for Prader-Willi Blog | 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

A Dream  I Can Believe In

When I was pregnant with Lily I had all of these dreams of what it would be like to have a baby. I read all of the books on parenting I could get my hands on; books about what to expect while I was expecting, how to have the happiest baby on the block, books on nursing and baby-led weaning and how to achieve developmental milestones in their appropriate order. But nothing prepared me for what happened on the day she was born.

Topics: Stories of Hope

My Child is My Inspiration: If He Can Do It, So Can I

A special contribution by guest blogger Karina O'brien

Karina shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

I Learned from My Daughter That Life is About Love

A special contribution by guest blogger Chelsea Balumas

Chelsea shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

Look for What is Good, Not What is Wrong

A special contribution by guest blogger Jeanne Huffman

Jeanne shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

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