Yearly Archives: 2016


Trip to Cambridge

By | December 7th, 2016|Categories: Uncategorized|

Once we returned from Jackson, we started research on the internet. I spent every evening looking through scientific papers I found by googling MSD. One of the papers I read was about 10 children in France. 8 of them had died before 10. We knew of 3 patients that where over the age of 10 from [...]

Willow’s Journey

By | November 20th, 2016|Categories: Uncategorized|

Willow’s Journey While I have never written a blog before, several people have suggested that I document our journey so others can follow it because they want to help, want to know more about Willow’s condition, or want to know how she is doing. My hope is that other families who may be going through this [...]