For This Dad, PWS Means Exceeding Expectations

for-this-dad-pws-means-exceeding-expectations.jpgA special contribution by guest blogger Blake Brenneman

Blake shared his story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

After our son, Evan, was diagnosed with PWS, I figured his progress would be slow going, but he is learning and growing faster than I ever imagined. At 15 months, his receptive understanding impresses me the most. Although he doesn't communicate much verbally yet, he shows us that he knows what we are talking about. He is starting to sign, point, and definitely knows how to get his point across.

Describe a time you surprised yourself with your ability to do the impossible.

Placing an NG tube seemed impossible at first. I had to successfully insert the tube twice before we were allowed to discharge from the NICU and it was hard, especially because Evan was putting up a fight (can't blame him). Even though we got better, it was always stressful to change it out. Without a feeding tube, Evan would not have survived his first few months, so we are thankful he had it, but we don't miss it.

Who has helped you in your PWS journey?

My wife, Natalie, has helped me the most on this journey. She is usually the one keeping up with the parent support groups and the latest research. She's on top of diet restrictions and planning Evan's menu. I don't have the most sophisticated palate, but Nat has learned to create many healthy, delicious meals for us. She is usually the one attending therapies and taking Evan to appointments. She's pretty good at keeping a squirmy toddler entertained in waiting rooms. She's an awesome mom and Evan and I are very lucky.

What would you say to a parent whose child has recently been diagnosed with PWS?

Don't focus on what your child won't be able to do, because you really don't know (and that's true for all kids). My wife and I often say "If only I could see a picture of him today (as a toddler) when we were back in the NICU." We feel like we wasted time feeling sad and I wished we hadn't because Evan brings us so much happiness. It's important to learn about your child's diagnosis, but it's more important to get to know your child. Enjoy it!

What gives you hope for the future?

There are many promising research studies that give us hope. We believe Evan has a bright future because of the commitment FPWR has made to advancing research, and we are confident that research will lead to effective treatments. That's why we are passionate about supporting this organization.

What are you thankful for?

I'm thankful for my family, our friends, and the PWS community. I'm thankful for researchers, science, and doctors. Most of all, I'm thankful for our energetic, curious, Elmo-loving little boy.

What positive life lessons have you learned from having a child with PWS?

I have a whole new respect for families facing special needs, and not just those with PWS. I'm more empathetic now. This diagnosis has made me a better, more patient person.

What does this quote mean to you?:

“Until you have a kid with special needs, you have no idea of the depth of your strength, tenacity and resourcefulness.”

That's true. The fundraising we've done has surpassed my wildest expectations. I never would have imagined that my wife and I would be planning fundraisers and events. I credit our friends and family who keep us motivated by generously supporting Evan. I recently got involved in FPWR media to help encourage others to get involved, too. It has been so rewarding to be part of this movement. Whatever hobby, talent, or skill you have, you can find a way to utilize it to fuel our mission: to help our kids live life full!

What does this quote mean to you?:

“Most people see what is, and never see what can be.”

Most people take things at face value and forget to consider what's underneath. I'm guilty of this when we first received Evan's diagnosis. I thought our lives were over, but it was really just beginning!

Do you have a story of hope to share with others about your experiences with PWS? Send it to us!

Understanding PWS - Slide Deck

Topics: Stories of Hope

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.