Our Daughter Constantly Surprises Us and Exceeds Our Expectations

In the summer of 1999, Mark Roth and Lauren Schwartz-Roth of Seattle, WA were expecting their first child with great anticipation. However, during the pregnancy, Lauren noticed decreased fetal movement, and when the doctor confirmed that the baby was too small, it became apparent that something was wrong. "We were terrified," said Lauren. Lauren was admitted to the hospital, and after many long weeks of monitoring, their daughter, Emma, was born 6 weeks early via C-section. "The doctors were puzzled by Emma," Mark and Lauren recall. "She had low muscle tone, was very sleepy, and had no suck reflex."

After five weeks in the neonatal ICU, Emma was diagnosed with Prader-Willi syndrome. "The doctors and therapists who had been working with Emma cried during the big meeting when they told us the news, says Lauren. "They acted like this was the worst thing that could happen. When we read about PWS, we better understood their reaction."

The Roths soon took Emma home, knowing more about PWS than they did their new baby. "We took care of her, fed her through a tube, used oxygen when necessary, and waited for bad things to happen." As each day Emma woke up a little more and became stronger, the Roths read about PWS and researched what, if anything, could be done. They tried traditional and alternative approaches with mixed success.

Meanwhile, Emma became "her own little person," laughs Mark. "At age 2, she began to talk. We got to see and hear all of the things that had been going on in her mind....and there was a lot in there!" Several years ago, the Roths joined the Foundation for Prader-Willi Research, and in 2004, Lauren became the vice president of the group. "Being in FPWR has been an extremely positive and healing experience for all of us," say Lauren. "The work we do with FPWR is one of the things we are most proud of."

Today, Emma is a thriving young girl who has taught her her parents many things. "We expect a lot from her, and she surprises us with her perserverance and her willingness to try new things. She has a great sense of humor and loves to sing and dance. She has completely changed our lives and the way we look at the world. She has taught us about acceptance, living in the moment, and changing expectations." Of their work in FPWR, Mark and Lauren say, "When Emma gets old enough to understand PWS and the struggles that she will face, we can tell her that Mom and Dad are doing everythig that they can to make PWS a non-issue in her life, and that we are happy to do it."

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

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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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