Who We Are

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This is a happy story. One that is both offered to and calls on many others to join in and share.

It provides answers to questions, although not all questions are yet answered.

And, it was born through Scarlet.

In 2016, our world was turned upside down when our 10-month-old daughter Scarlet caught a rare strain of the flu that attacked her heart. Twenty months of numerous heart assessments, hospital visits, doctor consultations, and prayers followed, culminating in her open-heart surgery for pacemaker implantation. She was two and a half years old.

Fast forward five years. An incident at school led to a not-so-routine pacemaker check that revealed a manufacturer error in the battery life of her series of pacemaker device. Plans were made for her second chest surgery, during which her pacemaker generator would be replaced two years ahead of the previous schedule. Scarlet’s talented medical team was able to minimize how intrusive the procedure was to maximum outcome.

Fast forward one year. Scarlet and her family moved to a new state. Her medical team provided documentation of accommodation she would need for school. Her new school refused to accept the accommodation. Ultimately, school leadership, district health professionals and a community advocate came to a table to act in Scarlet’s behalf. She now has a 504 Plan, which is updated regularly, in place at her elementary school. And, the community is more informed, safe and united.

Scarlet’s situation is not unique; every year, roughly 20,000 children are born needing pacemaker surgery. Many more encounter health traumas, like what occurred for Scarlet, that require pacemaker implantation. The Pediatric Pacemaker Project exists for these children and their many caregivers to centralize dispersed information and unify those with special heart machines.

This is a happy story. It’s one where little hearts find their beat.