Victoria “Tori” Ruth Brackbill passed away 1 year ago today from Krabbe Disease, a neurological disoder that affects the white matter of the brain.
Tori Brackbill lives in our hearts forever. Our Founder, Bayley Paharik, was able to meet sweet Tori and her parents, Lesa and Brennan, on February 26, 2016 – 1 month and 1 day prior to Tori passing away.
Bayley Paharik was also able to attend Tori’s Celebration of Life Service in Harrisburg, PA on April 9, 2016.
Tori’s parents have been working on advocating for Newborn Screening in Pennsylvania, so all babies born in Pennsylvania can be screened for Krabbe Disease and similar diseases. Hannah’s Law passed in 2014, but still hasn’t been implemented, so they are working to improve the Newborn Screening Program in PA. Learn more about their work from the latest update in August 2016 here. They are currently in the process of starting IVF and hopefully will be starting adoption soon too, so Tori can be a big sister. You can find out more by clicking here.
Tori is greatly missed and we ask you to remember to be kind especially today in honor of Tori’s 1 year Heaven anniversary. We will always fight for children like Tori, so they have a chance at life and know that they are loved.
Her mom, Lesa, continues to post on their blog here and Facebook page here. Be sure to follow their journey.
We love you, Tori!