Victoria “Tori” Ruth Brackbill was born on July 30, 2014 perfectly healthy. Then, in January 2015, she started having difficulty with reflux issues. After undergoing many tests, Tori was diagnosed with Krabbe Disease in February 2015 at just 6 months old.
Krabbe Leukodystrophy (pronounced “crab ay” – also known as Globoid Cell Leukodystrophy – is a terminal genetic disorder that causes death by the age of two in most cases. Affected children are unable to produce the enzyme galactrocerebrosidase (GAL-C), which protects the Myelin in the brain. Eventually, the central and peripheral nervous systems are unable to function normally, causing intense pain and developmental regressing around the age of six months (for early infantile onset). Krabbe is a rare disease – it affects an estimated 1 in 100,000 people. If caught before symptoms occur, life-saving treatment can be given in the form of a stem-cell/bone marrow transplant. See Hunter’s Hope Foundation or Judson’s Legacy for additional details. (Above information compiled by handout Tori’s parents had available at her Celebration of Life service on April 9, 2016).
Tori’s diagnosis of Krabbe Disease was of course very devastating to her parents, but they decided to choose joy and to fill her short life with a lot of bucket list adventures!
In her short life, Tori has experienced so many memories. Unfortunately, Tori passed away on March 27, 2016, Easter Sunday at almost 20 months old. Tori is greatly missed, but her legacy lives on.
I, Bayley P., Founder of Hope Alive Ministry, was able to attend Tori’s Celebration of Life on Saturday, April 9 in Harrisburg, Pennsylvania.
Please help raise awareness of Krabbe Disease. Tori’s life matters! She will continue to change so many lives through her legacy. Follow Team Tori on Facebook where her parents will continue sharing ways on how you can help advocate for Krabbe in the state of Pennsylvania and raise awareness of Krabbe as well as continue sharing pictures of precious Tori to continue her legacy. Subscribe to their blog as well where her mom will continue to post sharing how they are dealing with their grief and advocacy opportunities and pictures of Tori. Please pray for her parents, Lesa and Brennan, her grandparents and many other extended family members and friends. Consider donating to Hunter’s Hope Foundation in her honor, so other children may not suffer the fate she did. Watch the slideshow I made honoring Tori’s life by clicking here. We will always remember Tori and Tori and her family will always have a special place in my heart.