-
BCBST – Let’s Talk
I never expected over 15,000 signatures on our Change.org petition
-
Blue Cross Blue Shield of TN Wants My Son to Die
My son is a joy.
-
What Charlie Gard’s battle says to rare disease parents
The battle for the life of Charlie Gard
-
When You Outlive Your Generation
I grew up in the 70’s and 80’s, the era of neon and Michael Jackson, pop rocks and Coke, E.T. and Stand by Me.
-
Letter No. 14: Dear Mothers
Dear young, innocent, typical Mothers, There was a day when I was just like you.
-
A Rare Disease Parent’s Top 10 Christmas Wish List
Christmas looks different for parents of kids with rare diseases. And instead of celebration, it’s often a difficult time. Visiting relatives with a child who is wheelchair-bound, or has a feeding tube, or with behavioral difficulties has to be planned, and packed, and possibly scrapped.
-
Therapy Thursday: 50% off Calmer – a book to help with your child’s medical trauma
If your child has a chronic medical condition, then you’ve probably encountered challenges with medical trauma. Or maybe someone else in your life faces this challenge. From minor flinching at needle sticks all the way to full blown meltdowns, you probably know how challenging it is to go from appointment to appointment, test to test,…
-
Why I Freak Out When My Son Says He’s Going to College
I don’t know what dang blasted cartoon is telling my son about things like high school and college, but I want to ban it. I drive down the road, rocking in my minivan, 90’s music on a low rumble so my kids can’t hear me sing, and my 8yo is going on and on about…
-
I have a confession
I have a confession. I’ve been advocating and writing about rare disease which makes total sense since Case’s condition is, in fact, what they call ultra rare. But lately, I feel like I’ve been hiding something. Not on purpose, it seemed like it was a temporary thing at first, it was really just nobody’s business…
-
Why? Why my child?
Why? That is a word that is heard often in the world of rare disease. It’s a word that is often heard in life. Why did this happen to my child? Why him? Why our family? Why would a loving God allow something this terrible? God spoke to me through a Nigerian man. A man…