Brackbill Family

Lesa is the Outreach Coordinator for Policy and Advocacy for the Leukodystrophy Newborn Screening Action Network (LDNBS.org) and is working toward building a coalition with all interested parties as we work toward a world where every baby is screened equally for all possible leukodystrophies. She is also the co-chair of the Krabbe Stakeholders Group and the Parent Advocate on the Lysosomal Storage Disorder Subcommittee of the Pennsylvania Newborn Screening Technical Advisory Board.

Lesa is the author of Even So, Joy: Our Journey Through Heartbreak, Hope, and Triumph which chronicles their journey with Krabbe Disease and finding hope and joy in the journey. In her “free time” Lesa is a tour guide at High Point – the home of Milton Hershey – and is raising identical twin boys, Isaiah and Caleb. Lesa and her family reside in Hershey, PA.

I recently saw that someone had noted in her chart this comment: “The parents are not handling all of the bad news very well.” Interesting that they felt the need to say that, but also that they didn’t do anything to help support us as we learned more about our daughter’s condition.

During that hospital stay they drew blood to test for a number of conditions and said it would probably take two weeks; when we received a call the next day and were asked to come in, we knew this was either going to be really good or really bad news.

It was bad news.

On Friday, February 13, 2015, our six-month old daughter – Victoria – was diagnosed with Krabbe Disease. We were told that she would likely pass away before her second birthday and that there was nothing we could do. Nothing. We were completely powerless in the wake of such devastating news.

We grieved. We were mad at God. We were numb. It’s amazing how many emotions we felt all at once. For about a month we allowed ourselves to process, to grieve, to adjust. And about a month post-diagnosis Brennan and I made a conscious decision to give her the best possible life – a joy-filled life – that we could. Following the example of other Krabbe families we had begun to know, we created a “Bucket List” of adventures as a way to create memories with Tori while she was still here. Doing this brought us joy, gave us thousands of pictures and memories, and provided her with new experiences. We won’t know until we get to Heaven what she got out of the adventures, but we hope she knew that we were doing these things for her because of our fierce love for her.

I blogged throughout her life (which eventually led to the book Even So, Joy) in an effort to process, document, and encourage others. We’ve chosen to be completely open with our story in hopes that it will help someone else someday.

Tori did well until mid-February 2016 when she began having “blue episodes” where her oxygen levels would drop to dangerously low levels and then rebound. We continued with our adventures and planned to leave for California on March 17. A few hours before we were supposed to leave for the airport, Dr. Escolar called and said that she didn’t recommend flying because of the excess fluid around Tori’s brain that had appeared on the most recent scans. In desperation, we decided to drive but ended up abandoning that plan the next day in Cleveland because of weather conditions and a few other barriers. This ended up being the hand of God at work but we didn’t know it yet.

My parents flew out, we rented an RV, and we spent a few days driving around New England. It was a beautiful way to travel and allowed us to keep Tori comfortable. An impending snow storm pushed us home earlier than we had planned and we arrived back in Harrisburg on March 26. That evening, Tori had another blue episode and her oxygen dropped to 4% – the worst one yet. She rebounded as always so I headed upstairs to get some rest while Brennan took the night shift.

My only request of God had been that the three of us be together when He took Tori to Heaven. That’s all I wanted. So when my phone rang at 5am and I heard Brennan frantically suctioning her and saying her name with such sorrow, I ran downstairs in dismay. She was gone. I hadn’t been there.

In that moment, I was angry. I asked God, “why?” and cried because I felt like He had ignored my one simple desire on this terrible journey.

Brennan and I called hospice and followed the steps we were instructed to follow while my dad held Tori, skin-to-skin. About fifteen minutes after she had passed away, she took a breath. And another. And another. Her eyes popped open – we couldn’t believe it! Tori was alive! Hospice came and said they didn’t know what to say because her numbers were good. We hugged her and cried some more because we had no idea how much time we had left.

The three of us laid in bed, Tori in the middle on her pillow, and we fell back asleep. Around 9:00am I was awakened by the pulse ox beeping and I watched her numbers drop. We told her it was okay, that she could go to Jesus, and she breathed her last. She was healed.

Tori went to Heaven on Easter Sunday 2016 (March 27), the very day that gives us the hope of Heaven because it celebrates the resurrection of Jesus. We met on Easter Sunday, she died on Easter Sunday. What a beautiful gift.

More than 500 people attended her Celebration of Life two weeks later and it was a day of worship. We had balloons, her entire giraffe collection (more than 200 from around the world), photos, bright colored clothing. I led worship with a group of my friends and family members with whom I’ve led worship over the years. It was a day to praise the Lord for bringing us through and for bringing her home.

Her diagnosis changed the trajectory of our lives – and especially my life – in more ways than one. On diagnosis day, we learned that her condition could have been treated had they screened for it at birth, but since Pennsylvania did not screen for it, we were robbed of the opportunity to try to save her life. It was too late.

In the midst of devastating grief, my new calling was given to me; my political science education – and prior experience with lobbying – finally made sense! I wasn’t supposed to change the world by being a politician – all of this was simply to prepare me to advocate for conditions like Krabbe to be included on each state’s NBS panel and to save lives by doing so, in memory of Tori.

I didn’t seek to add Krabbe to Pennsylvania’s NBS panel through legislation; rather, I sought other necessary reforms to the NBS program itself. I worked in conjunction with the PA NBS Technical Advisory Board to ensure equal access, equitable treatment, and cost-reduction overall, correcting the inadequacies present. It took six years and three different bills, but our third attempt at reforming our NBS program was a success in November 2020. This is Tori’s legacy.

As a result of these efforts, all babies born in Pennsylvania are now screened for 63 conditions (and counting), every hospital screens for the same conditions, and we are in alignment with the RUSP. Most importantly for our family, Pennsylvania has already identified four babies with Krabbe (in the first seven months of screening), giving them a chance at life that our daughter did not receive.

I co-founded the Leukodystrophy Newborn Screening Action Network and am doing all that I can to advance Newborn Screening for leukodystrophies so that no one has to endure what we have. Diagnosis Day is traumatic, but when it comes through NBS it is trauma with hope. That’s what we want to give parents. Hope.

I never imagined that I would become an advocate, but this calling was forced upon me without warning and I have embraced it. I’m certain that this was always supposed to be my story. I am a living testimony that the Lord can use every experience, every skill, everything for good, and that brings me joy.