Saturday, April 9, 2016
I don't often use this blog to share personal platforms, but some days need to be an exception.
Over the past year, I've been given the opportunity to come to know Lesa Brackbill, and her daughter, Tori. Tori was a beautiful, fully normal baby, until at 5 months old she was diagnosed with Krabbe leukodystrophy. Krabbe is a progressive, degenerative disease - at the time of her diagnosis, there was nothing medical science could do to save Tori. Tragically, had the Brackbill's hospital screened for Krabbe at Tori's birth, a procedure could have been done to save her life.
On Easter Sunday, Tori went to sleep with her parents next to her, and woke up with Jesus.
Today, Tori's family and friends are gathering in Pennsylvania for a Celebration of Life. While I can't be there physically, I couldn't let the day go by without letting Lesa, Brennan, and the rest of Tori's family know how much her short life has impacted mine.
Tori reminds me to live each day with purpose. Tori reminds me to hug close my kids. Tori reminds me not to let a minute go by without telling someone how much I care about them. Tori reminds me to make a Bucket List, and check off as many items as I can. Tori reminds me to be passionate about a cause, and work to make the world better. Tori reminds me every day to Choose Joy.
To read more of Tori's story, and to see her Bucket List, visit The Adventures of the Brackbill Family
To learn more about Krabbe Leukodystrophy, and to find out if your state requires newborn screening for this devastating disease, visit Hunter's Hope