'My Life Was Enriched By Having a Sibling With PWS'

my-life-was-enriched-by-having-a-sibling-with-pwsA special contribution by guest blogger Deb Cooper

Deb shared her story via our Stories of Hope questionnaire.

What would you say to a person whose loved one has recently been diagnosed with PWS?

I am a sister of someone with PWS. She was born in the 1970s and we were not given proper diagnosis until she was 23. I would say to them: Don't believe the bad press. There are varying degrees of PWS. There is a lot more awareness and treatment out now to help with some of the issues with PWS than when my sister was born.

What gives you hope for the future?

More awareness and research, more understanding for people with learning disabilities.

What are you thankful for?

For having known my sister with her PWS. My sister was very intelligent. She took everything literally and didn't know how to tell a lie. She needed to use oxygen, but that didn't stop her from being independent. She would take her oxygen on the bus and go to Build-a-Bear, which she loved. There were times when she had to rest every four steps, but she was determined to get her bears.

She was a much-adored family member. Our lives were richer for having known her, and my life was enriched by having a sibling with PWS.

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

I've learned acceptance of differences, and unconditional love. I've learned that strength comes from within; my sister was as strong as an ox.

What does this quote mean to you?

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

You have to dig deep to get through the heartbreak of knowing your child will have more problems than the average child.

Who has helped you in your PWS journey?

My family, the teachers at the special school my sister went to, the church that she was really involved with, her Facebook friends, and nurses and doctors at the Heartlands Hospital.


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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.

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