Two days ago I wrote this about how unexpected expenses (this week being a $413 car repair) keep eating into our budget and making things so tight for us. I … Continue reading God Always Provides
Disappointment or Gratitude
Lately we’ve been hit by multiple unexpected expenses that have thwarted our efforts to be “gazelle intense” and become debt free. It’s been discouraging, to say the least. Each time … Continue reading Disappointment or Gratitude
Respect is For Everyone
I’ve recently been in a mildly frustrating situation on a weekly basis. Tonight I decided to say something to try to change it, and it wasn’t well-received. Well, it may … Continue reading Respect is For Everyone
Krabbe Awareness Month: Day Thirty
We hope you’ve learned something new this month, but we also hope that you’ve been moved to take action.
What can you do?
- Write/call your legislators. It only takes a few minutes, and it can make a huge difference.
- Donate to organizations like Hunter’s Hope so that they can continue funding the Leukodystrophy Care Network and supporting affected families.
- Read (and tell others about) my book, Even So, Joy: Our Journey Through Heartbreak, Hope, and Triumph. We want Tori’s story to continue to touch lives and it means so much when we hear about others reading it.
Scars
I remember the doctor asking me if I would be okay with an eight inch scar on my forearm. I was seventeen, after all. Most teenage girls would probably stare … Continue reading Scars
Krabbe Awareness Month: Day Twenty-Nine
Rare diseases aren’t rare as a whole, but each individual disease is considered to be rare.
Krabbe Awareness Month: Day Twenty-Eight
See this post for more information on the state of NBS in the U.S.
See babysfirsttest.org to learn more about what is included on your state’s NBS.
Krabbe Awareness Month: Day Twenty-Six
South Carolina passed a bill after this image was created, so they will begin testing in the next 1-2 years.
Indiana expects to begin testing in 2020.
Pennsylvania will hopefully be testing by next year. We have a bill in the legislature (HB 730, numbered for Tori’s birthday) that will make screening equal throughout PA, and Krabbe will become mandatory. If you live in Pennsylvania, please contact your state representatives/senators and ask for their support!
It All Works Together for Good
Today was one of those days where everything made sense, once again. It was a day filled with non-coincidences (meaning that God was clearly at work because there’s just no … Continue reading It All Works Together for Good
Even So, Joy 