Mirriam’s Story
Mirriam was born at home in July 2000 and by 18 months was noticeably developmentally delayed. Thus began an journey that wound... Read More
Emma’s Story
Emma graced this world upon her entry in 2008. In spite of her rough start in life, she was a determined baby!... Read More
Marlies’s Story
Before I tell the story of our daughter Marlies, we would like to thank all parents who share their experiences with us.... Read More
Meeting of the Moms
I have amazing friends. I do. They are generous and encouraging. They willingly overlook the many times I ignore their text messages and cancel... Read More
Cyclic Vomiting? This May Help.
A trend has been emerging in the White Sutton Syndrome (WHSUS) community recently. Caregivers have indicated that quite a few individuals with... Read More
Toilet Training with White Sutton Syndrome
Toilet training is a daunting undertaking in the best of circumstances. For those of us with children who have White Sutton Syndrome... Read More
Standard Tests After a Diagnosis
Last week, we asked for you to submit questions that you had about White Sutton Syndrome (WHSUS) for which you didn’t already... Read More
Burning White Sutton Questions?
When we first found out that our son had a POGZ mutation, we had a thousand questions. At the time, we knew... Read More
What Is De Novo, and Why Does It Matter?
It’s strange how something that that matters so little when looked at from an objective point of view can matter so much... Read More
Home Genetic Testing: Is It For Me?
I have an admission to make: I am a cheap skate. Whenever purchasing something online, I always look for the cheapest place to... Read More