Foundation for Prader-Willi Blog | Stories of Hope

My Dreams Are Bigger Now Than Before My Son's PWS Diagnosis

A special contribution by guest blogger Laura Hollatz

I am a dreamer. Always have been, and always will be. When I was a little girl, I wanted to be Wonder Woman.  I also dreamt of living in a huge castle with all my friends that was made out of candy. I actually still dream about this, at least the castle and candy part. I could also fly and be anywhere in the world in under a minute. Yep, the good ole days when the sky was the limit. Dreams are good. A part of all our consciousness. They propel us to be the highest version of ourselves.

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Our Grandchild With PWS Is Our Shining Star, Our Lovebug, Our Hero

A special contribution by guest bloggers Amy and Bob Chipetz

Brandon will be 5 years old on May 24. We remember seeing him, our first grandson, shortly after birth. We were all so elated of the arrival of our daughter and son-in-law's firstborn. Within 24 hours, concerns emerged about Brandon's sucking reflex which led to his eventual transfer into the NIC unit.

Everyone was simply ecstatic when he was discharged home 10 days later, and the struggle to get him the nourishment he needed given his feeding difficulties began. Brandon was a month old when the genetic testing returned with the diagnosis of PWS.

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Mom's Advice for PWS Parents: 'Watch Your Baby Fly!'

A special contribution by guest blogger Jennifer Terranova

We all have dreams when we plan a family. We all believe our babies will be the cutest, sweetest, most amazing little things in the whole wide world. We are all determined that our future little ones will achieve whatever their little heart’s desire. 

But when you give birth to a baby with a diagnosis, especially one which you have never even heard of, all of these thoughts swirl into one big pool of questions including: “now what” and “why us” and “can we even care for a baby like this?”.

Topics: Stories of Hope

Happy Dreams Return for Mom, as Baby Becomes Little Boy

A special contribution by guest blogger Becky McWilliams

When I became pregnant with my second child, I had endless dreams.

I dreamt about whether this mysterious little being would be a girl or another boy. I dreamt about the relationship that he or she would develop with our then 3 year old son, Jackson. I dreamt about all of the miraculous things that this little life would achieve. My dreams were filled with happiness. My dreams were filled with promise. My dreams were filled with hope.

The moment when my doctor told me that “the baby wasn’t growing correctly” is forever etched into my memory. Following this, a short period of repeated ultrasounds and static growth scans led to an unexpected and emergency delivery of this anticipated little being at a mere 33 weeks. The result; a 4 pound, 1 ounce magical baby boy that doctors immediately suspected something was “very wrong” with.

Topics: Stories of Hope

A Beautiful Life: One Mother's PWS Journey from Fear to Hope

A special contribution by guest blogger and One SMALL Step host Rachael Petterson

Every night, for several weeks following my daughter Mae’s birth, I stayed up late reading medical journal articles and studies. I was determined to figure out why Mae did not cry, move her arms and legs, or open her eyes. The neonatal intensive care unit (NICU) doctors said that there might be something wrong with Mae, who was born two months early, but recommended we give her time.

The nurses said Mae was floppy. One told me that Mae was “special.” I walked into the NICU each morning with a pit in my stomach, fearful of what I might learn. My amateur scientific research made me feel like I was in control of something, even though logically I knew that the control I felt was an illusion. The day we had Mae transferred to a new hospital, a geneticist told me that she believed Mae had Prader-Willi Syndrome, or PWS. Several weeks later, tests confirmed the diagnosis. 

Topics: Stories of Hope

One Small Step for Lincoln: PWS Research Gives Me Hope

A special contribution by guest blogger Kristine Mosca

There was nothing more exciting than to hear that we were expecting our fourth child. I had delivered three beautiful children already and felt more than ready to welcome our fourth baby into the world. But when Lincoln was born a month early via C-section, the operating room was silent. We knew something wasn't quite right. We quickly discovered that not only was he unable to cry, he was very floppy, and had no suck reflexes either.  

Topics: Stories of Hope

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.

How 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!

Topics: 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.

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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

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