Lesa and Brennan Brackbill’s daughter, Tori was born in 2014 with a rare and often fatal disease that’s treatable if caught early through newborn screening. But there was no screening for it in their home state of Pennsylvania. So, Tori’s health deteriorated, and she passed before she reached her second birthday.
Tori had been born with Krabbe disease, a devastating genetic condition that results in progressive damage to the nervous system.
Lesa and her husband Brennan say a story that could have been filled with sorrow and despair was filled instead with gratitude and joy.
That’s after Lesa embarked on a four-year campaign for Krabbe disease to be included in Pennsylvania’s mandatory list for newborn screening. Her tireless efforts included garnering the support of her state senator, John DiSanto, to drive through a change in state law.
Moved by the family’s tragic story, Senator DiSanto sponsored an amendment to the state’s Newborn Screening Act in 2020.
The change was testament to Tori’s short life for the Brackbills. And Lesa knows of four other children with Krabbe’s who have survived the diagnosis thanks to newborn screening.
Separately, Brennan – a professional massage therapist – said that singing and talking to Tori while holding her to his chest soon after her birth bonded them from the very beginning. He provided the same skin-to-skin touch when the couple’s twin sons were born, a tad irritable, two years later. It calmed them both down almost instantly.
Sharing their personal stories has attracted media attention at home and abroad, helping many other parents benefit from their experience.
It’s a timely reminder in the wake of Rare Disease Day last week that there’s immense power in the personal if you’re willing to share it.
Your personal story may not be as exceptional as the Brackbills, but people respond to personal experience in every setting; professional, cultural and social. Next time it’s your turn to speak, try bringing something personal from your experience. Connect with hearts as well as minds.
Peter Coë
March 7, 2022