Lesa shares the story of her daughter Tori, who was diagnosed with Krabbe - a rare disease that attacks the white matter of the brain - when she was 5 months old. Through endless appointments, Lesa and her family decided to make a bucket list for Tori and celebrate their daughter's life. In the midst of terrible sadness, they chose joy, they chose love.
After entrusting Tori back to God when she was almost 20 months old, Lesa became an advocate and lobbyist for newborn screening for rare diseases like Krabbe, because if Tori had been screened for Krabbe when she was a newborn there could have been medical interventions that helped manage her symptoms.
If you are curious about her work or want to hear more of her story, check out these links:
Lesa's book about Tori's life, titled "Even So, Joy: Our Journey Heartbreak, Hope, and Triumph: https://www.barnesandnoble.com/w/even-so-joy-lesa-brackbill/1127913296
Lesa's Blog: https://thebrackbills.com/
Many articles about Tori's Story and the Brackbill Family after Tori's death:
https://people.com/human-interest/brennan-brackbill-skin-twin-sons-death-toddler/