Tori was admitted to the hospital almost exactly ten months ago for a feeding tube pre-diagnosis. That hospital experience was incredibly stressful because we felt like we were in … Continue reading Ten Months Later
Tag: Leukodystrophy
Back in the Hospital
One thing we’ve learned about our Tori is that she goes all in. Rarely is anything subtle or gradual. We brought Tori to the ER tonight because her breathing changed … Continue reading Back in the Hospital
Take Action to Implement Newborn Screening in PA
Tori’s story being in the news last week has started an amazing campaign to get Pennsylvania to start screening all newborns for Krabbe and other similar genetic diseases! The law … Continue reading Take Action to Implement Newborn Screening in PA
The Push for Implementation of Hannah’s Law (Act 148 of 2014) in Pennsylvania
After over a year of lobbying by the parents of Hannah Ginion, Hannah’s Law (Act 148 of 2014) was signed into law by Governor Tom Corbett on October 15, 2014. … Continue reading The Push for Implementation of Hannah’s Law (Act 148 of 2014) in Pennsylvania
Tori in the News
It occurred to us a few days ago that perhaps Tori’s Bucket List could be a catalyst to get Krabbe in the news. After all, everyone loves a positive story … Continue reading Tori in the News
Tori’s Bucket List: See a Giant Cactus
If you go to Arizona, going down to Tucson to see the gigantic cacti is well worth the drive. This was a first for our little family – we had seen … Continue reading Tori’s Bucket List: See a Giant Cactus
Tori’s Stander
Today was Tori’s final stander fitting and now we are set to use it! You can read about the stander and its purpose here. We waited less than three months … Continue reading Tori’s Stander
Leukodystrophy Awareness Month – Day Thirty
Send your letter here: https://secure3.convio.net/hhf/site/Advocacy?cmd=display&page=UserAction&id=111
Even So, Joy 