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

My Child is My Inspiration.jpgA special contribution by guest blogger Karina O'brien

Karina shared her story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

When we received Noel's diagnosis, we were told he wouldn't be walking before his 5th birthday and will be NG fed until the age of 2. Noel is almost 3 and has been walking now a good 4 months and ditched the NG at 5 months! Noel has such determination in him, and I admire him for his strength and courage.

Who has helped you in your PWS journey?

The diagnosis was hard to digest. At the time, I wasn't involved with social media and struggled greatly to get my head around it all. Google terrified me to the core. Since then I have a couple of groups which help greatly with support in PWS and are my lifeline if I have questions!

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

To be honest, I didn't think I could do any of the special needs thing. I doubted myself on a huge scale and started to suffer with depression. I have since turned this around and said 'Yes, momma, you can do this.' Noel is my big inspiration, and if he can do it, so I can I. I have changed as a person, and the world today seems different. I have become a stronger woman and an advocate for my child. To me, this is a great achievement.

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

Stay away from Google. Seriously, Google will not be your best friend. Speak to other families in the same situation, it makes a massive difference to your train of thought, because as soon as you read Dr. Google, you will crumble just like I did. Hearing positive stories from other families helps immensely.

What gives you hope for the future?

I take each day as it comes and don't plan for the future, as you never know what can happen tomorrow! But if there was one thing, a cure. To take away the pain of hunger that one day will affect my baby day in and day out.

What are you thankful for?

My family and friends. I'm also thankful for the care we receive by our national health service and the support. Everybody needs support!

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

Life is not black and white. PWS has certainly opened my eyes! I'm stronger now than I ever used to be.

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.”

It's a quote that I can relate to, as well as many other parents in the same situation. It takes very special people and patience to bring up a child who needs the extra TLC. I'm most definitely a different person since my little boy's diagnosis.

What does this quote mean to you?:

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

There is more to a child with special needs than meets the eye, they can be anything! They have the same ability as any other child but (things) take them a little longer. They have strength and courage as well as determination.

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.