All in Parenting the CWN

Noah's Journey With Narcolepsy--Guest Post By Lindsay Bryant Jesteadt

 How do you come to terms with your child having an incurable illness?

This week Lindsay Bryant Jesteadt talks about her young son Noah, his journey with narcolepsy and the impact his condition has has on the family. 

You'll want to read this...

Newly Diagnosed? How To Begin The Narcolepsy Journey With Insight And Hope

I remember May 24th 2010 well. It was the day a doctor from India told me my 3-year old daughter had narcolepsy.

After 6 months of failed hospital visits and invasive tests to rule out a brain tumor, epilepsy, and-- wait for it--drug abuse, I felt incredibly relieved. That relief was was centered around the the thought "it could be worse. It could be so much worse." 

Letting Go--One Parent's Approach To Self-Advocacy In Our Children With Narcolepsy

I'm a big believer in advocating for our children who live with chronic illness but there comes a point when we need to let them speak for themselves.

Just recently I was challenged to think more about his through the Youth Ambassador Program that's organized by Narcolepsy Network. Essentially it's about our children being empowered to self-advcoacy, and the benefits are huge.

Our Xyrem Journey

Back in the summer of 2011, we moved from England to the USA for two reasons. One was to seek expert care for Mathilda at the Centre for Narcolepsy Research at Stanford. The other was to get her treatment.