Six years ago today (at 9:05am) we said farewell to our beautiful daughter.

That day, we went through the motions of implementing the decisions made months before – unwanted tasks made easier by preparation. One of those decisions was to donate Tori’s brain and spinal cord to the Brain Bank at The University of Pittsburgh in an effort to assist with research that will one day lead to a cure.

Dr. Maria Escolar and Anne Rugari (Partners for Krabbe Research) took care of everything that day, and the next day Penn State Hershey Medical Center took the lead. They called before and after the procedure to let us know what was happening and the dignity with which they treated Tori was heartwarming.

A few months ago I participated in a panel (you can watch it here) with other Krabbe parents (hosted by KrabbeConnect) who also chose to donate their child’s brain and we had the opportunity to hear from the Doctor in charge, Dr. Julia Kofler – as she put it, she’s their boss and she puts them to work.

We learned about how she uses their tissue, learned that some of them went on a trip to Italy, and I felt so proud of our decision to donate Tori’s brain for this important work. As my friend and fellow Krabbe mom, Natasha, said, this gives our children autonomy and purpose that they never had while living. We also learned that the tissue can last up to 100 years if properly cared for, which means that part of our children will outlive us after all.

Last week, Dr. Kofler gave a presentation at the KTRN meeting I attended in Florida and we learned more about her findings (which will be featured in a paper she will publish this year). As she went through her slides, she posted a chart of all of the brains in the bank and I found Tori’s. She is the only 20-month female listed, and the mutations match.

Imagine my surprise when I saw this slide during her presentation:

Tears filled my eyes as I realized that Tori had indeed been part of these incredible findings and that it wouldn’t have been possible without her and the other precious babies whose brains now reside in the brain bank.

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Life is very different six years later, beyond the obvious differences of a different house in a different town, and having twins who are more than twice her age now. We are forever changed by having and losing a daughter to a rare, treatable, genetic disease. Sometimes it all still feels surreal, other times it’s a crushing reality. We are waiting for the day when the boys begin to wonder where “baby Tori” (as they call her) is, but that day is still to come.

Tori’s legacy continues through our family, through my work with the Leukodystrophy Newborn Screening Action Network, through Act 133 of 2020 here in Pennsylvania which has already given four babies a chance at life she didn’t receive, through my book Even So, Joy ,and through the work being done with her brain at The University of Pittsburgh under the caring hands of Dr. Kofler.

Her life was short, but it mattered and her impact will be long-lasting. We will make sure it is.