It is so important for Saylor’s parents, Fred and Rachael Plantadis, to help fund research for the disease that took their daughter from them at such an early age. Although we are still waiting for a definitive diagnosis, Fred and Rachael wanted to set up this GoFundMe in Saylor’s memory in hopes that we can further the research for a cure and to support other families impacted by this disease.
I recognize that many of you did not have the chance to meet Saylor. She was born on July 13, 2020 - our little chunky Sumo wrestler! For two months, Saylor thrived - such a strong little girl. After failing her hearing test, her doctors discovered that Saylor had severe hearing loss. Although her family was heartbroken and worried about how this may impact her life, we all rallied behind our girl, knowing that we would be fierce advocates for Saylor. She then started to have trouble feeding and was losing weight. Doctors were concerned and Saylor received a feeding tube to make sure she could get the nutrition she needed. While in the hospital, Saylor’s MRI revealed hallmark signs of a leukodystrophy or vanishing white matter disease. Fred and Rachael were absolutely devastated hearing that not only did their beautiful daughter have a rare brain disease, but that there was no cure. Despite gaining weight, Saylor’s health continued to decline. She had little energy and began having breathing issues. On their final trip to the hospital, Saylor was placed on a ventilator. Her little body could not breathe on its own. Saylor became a beautiful angel on December 5, 2020.
Such tragedy goes against all reason or understanding. Her parents want to ensure that the devastating loss of their daughter is not in vain. All preliminary test results and imaging suggest that Saylor had Leigh Syndrome, a rare mitochondrial disease. Once we have a final diagnosis, funds will be directed toward research for a cure in loving tribute to Saylor. Please join us in supporting Fred and Rachael and make a donation in memory of their sweet baby girl Saylor. If you would like to learn more about Leigh Syndrome or other mitochondrial diseases, please visit the National Organization for Rare Disorders (NORD) and the United Mitochondrial Disease Foundation . Please continue to keep Fred, Rachael, and their boys in your prayers. They need to feel the support of their family, friends, coworkers, and community to help them through this tragedy.
- Jennifer Welte
- Lauren Novack
- Cheryl Rahn
- Melinda Livie
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