Foundation for Prader-Willi Blog | Stories of Hope

10 Lessons In Strength From a PWS Mom and Fundraiser

Larisa Martiniak, mother of two, hosted her first One Small Step walk this fall in Berkeley, California.  We asked her to share a bit of her perspective on what it’s like to find out her child has PWS, and how it has empowered her to take action in the day to day.

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Two Moms Harvest Hope With 5K for PWS Research

While most of us will be relaxing on Thanksgiving Day, watching football or entertaining family, Rachael Fischer and Julie Foge will rise before the sun to host the Harvesting Hope 5K run. 

This will be the third year in a row that these two amazing, determined women will host this family-focused event — which also includes a 1K — to raise funds for PWS research.

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Taking Charge and Changing the Futures of Our Children With PWS

A special contribution by One Small Step host Lisa Matesevac 

As we embark on hosting our 5th One SMALL Step event, I stop and think how this all got started for our family. Like most families, we are VERY busy. At different times, we are EXTRA busy.

When our son, Evan, was born in 2006 my husband and I had different perspectives on how to manage his future. Being in the medical field, I was certain with enough research I could find the best specialists, devour mountains of research and make a plan of care to ensure his best outcomes. My husband, Michael, was determined to make his quality of life the biggest priority. Laughing, playing, and enjoying family activities was his center of focus. Together we knew we had to be impactful on the PWS community as a whole. We both passionately believed research was the future and we cultivated hope from our visits to specialists and by surrounding ourselves with a local community of families like ours.

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Aaron Dunn and Family: Hugging Our Way to a 'Hopefull' Future

A special contribution by Amanda Dunn, Host of HopeFull: Funding a Cure for Prader-Willi Syndrome, Cincinnati, OH

For our 5-year-old son Aaron, it all starts with a hug.

Not just any hug. He has a signature, enthusiastic hug. It’s clear just how capable and happy he is by the strength of that hug — and he offers it to everyone he meets. It's one of the things that has powered our fundraising for PWS research and brought our community together to secure a "hopefull" future for people with PWS. 

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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 share and explore. One more cute baby for my oldest Alexandria to dote on and tease and teach. One more for my husband Nick to spoil and love. One more for this mama to heal with from a heartbreaking miscarriage. One more to be complete.

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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 daughter’s unique symptoms. 

In the fall of 2016, Emma underwent whole-exome sequencing, which revealed a single mutation in the MAGEL2 gene, a mutation that was too small to be detected on less-refined tests. Finally, the Nelsons had the diagnosis they had been searching for. Their daughter had an ultra-rare genetic disorder: Schaaf-Yang Syndrome (SYS). Emma was only the 28th patient to be diagnosed.

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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 the pamphlets the doctor gave you and cried. You Googled — or your husband Googled — and you cried some more. The fear of the unknown struck with so much intensity that it was hard to imagine having any kind of “normal” in your life ever again. I have to give shots to this sweet baby every day? She has to have surgery to insert a g-tube so we can leave the NICU? But, we were supposed to be adding a blessing to the family, not a burden. What will our two boys think about having a sister with PWS? Will they envy her and the attention she receives? Will they feel the burden of having a sibling that’s not “normal”?

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'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-adventure story.

I remember finding out I was pregnant with baby boy number three. It was the week we planned to leave for the Dominican Republic and I had to stay home due to the Zika virus. There was no way I would risk anything happening to this miracle baby. I worked so hard getting pregnant with my first two sons that finding out I was pregnant withnumber three without trying was a complete shocker. I just knew this was God’s special gift for us. Upon finding out it was another boy, I definitely had some strong feelings. I was afraid he would be overlooked as "just another Kalasek boy.” I was afraid no one would be as excited about him as they were about his brothers—same ol’ same ol’, right? Ha! If only I knew then that this little boy would be quite the show stopper.

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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 have any expectations. She got out of the hospital, we didn't have any answers but she seemed a little better. I didn't know what to expect. I got the diagnosis when she was almost 3 months old and my world was shattered. So from not having expectations, to see her how full of life she is now, saying that she has exceeded my expectations doesn't do her any justice. I can say that at only 9 months, she is a fierce, persistent and determined little girl.

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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.

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