Willow’s Blog

/Willow’s Blog


  One of the hardest parts of Willow's diagnosis was how to tell our girls. How did we tell them that their sister is dying?   Our middle daughter Jenna is 10 years old. She and Willow are 7 years apart, even more if you consider Willow’s developmental delay. Jenna is like a second mother for Willow. She dresses her up, she [...]

By | January 29th, 2017|Categories: Uncategorized|1 Comment

Trip to Cambridge

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 the Facebook group, no [...]

By | December 7th, 2016|Categories: Uncategorized|0 Comments

Willow’s Journey

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 nightmare may see this [...]

By | November 20th, 2016|Categories: Uncategorized|0 Comments