Brennan, Lesa, Victoria (Tori), Isaiah, Caleb
Podcast Episode Show Notes
“It doesn’t matter how long we live, but how we live…”
In today’s message, Lesa shares her story and how she chose joy in the midst of her heartache. She learned that even though they walk hand-in-hand, joy is a choice. Lesa shares how she daily, moment by moment, made the conscious decision to choose joy. Even in the painful parts of her story, she knew that God was the Author and trusted in His greater plan written throughout every page.
Life is short… How are you going to choose to live?
Lesa Brackbill holds a Bachelor of Arts in Political Science and is currently working toward a Master of Arts in Strategic Communication, both from Azusa Pacific University. Lesa and her husband, Brennan, became involved with Krabbe-related advocacy when their daughter, Victoria, was diagnosed with Krabbe Disease in 2015. Using her knowledge and experience, Lesa helped to reform the Newborn Screening program in Pennsylvania, making the program stronger, and as a result of her efforts Pennsylvania began screening for Krabbe in 2021.
Brackbill Family Story
I moved from California to Pennsylvania in 2008 having no idea just how much my life was about to change. I chose Harrisburg in order to further my political career but God had other plans.
On Easter Sunday 2009, I met my husband, Brennan, at church. Neither of us thought much about that first meeting, but thankfully the Lord intervened; as we spent more time together it became clear that we were meant to be. We got married in November 2010 on a beautiful fall day in Northern California.
On July 30, 2014 our daughter, Victoria (Tori) was born. She had a full head of dark hair – just like her mama – and big, bright eyes that captivated all who saw them. Two weeks later, I remember remarking to Brennan that everything must have been fine on “that test” – Newborn Screening – because we hadn’t heard otherwise. Oh, how I wish we’d been right.
On January 7, 2015 a switch flipped and our previously happy, expressive, daughter became unconsolable and irritable. She stopped smiling, playing, talking and seemed to be in pain. She threw up almost every time she nursed and was losing weight. After a misdiagnosis of reflux, we took her to the ER at Penn State Hershey Medical Center on January 30 for a CT scan that led to the words “brain abnormalities.” She had an MRI the following Wednesday; that Friday we received the first diagnosis – leukodystrophy. Tori was admitted to the hospital that night for a feeding tube and a string of tests that brought bad news each time.