The Sanford Foundation recently celebrated their 21 st Annual Sanford Children’s Gala and marked 15 years since the ‘Castle of Care’ opened in Sioux Falls. A local family was invited to celebrate the event all because of a special little girl. Taylor Cole, the 6 year old daughter of Ethan and Charmayne Cole of Langford, along with their family members were part of the big night. The little girl was honored and even brought up on stage during the event. According to her mom, “Taylor was invited to the gala by the professionals at Sanford. They knew Taylor’s journey and wanted to share her incredible story on stage.” And it certainly is a remarkable tale. At just five days old, Taylor was flown to Boekelheide Neonatal Intensive Care Unit in Sioux Falls. While there, the Doctors found human parechovirus in her cerebral spinal fluid. It became evident that viral meningitis was attacking her brain. It progressed through the brain barrier as encephalitis, which resulted in white matter brain damage and volume loss. White matter controls your communication connections and how your brain is able to exchange information with the rest of your body.
Unfortunately, the vast majority of Taylor’s white matter was impacted which impairs nearly all of her bodily functions, her mom explained. Multiple diagnoses have come since the family’s 11-day NICU stay including spastic quadriplegic cerebral palsy with dystonia, epilepsy, cortical visual impairment, global developmental delay, failure to thrive, as well as central and obstructive sleep apnea.
Thanks to the amazing team at Sanford Children’s, Taylor has been able to have multiple surgeries that have notably improved her quality of life. She had a gastrostomy tube placed in 2020 to help supplement nutrition through enteral feedings, left eye strabismus muscle repair in 2021, and tonsillectomy and adenoidectomy in 2024 that, for now, has resolved Taylor’s apnea. Although this all may sound daunting, Taylor is living a full life. She is a kindergartener in the Langford Area School District, but she does all of her educational learning at South Dakota School for the Blind and Visually Impaired in Aberdeen five days a week. She is able to pop into the Langford school on occasion to join in on social events and visit her ‘Senior Buddy.’
Some of Taylor’s favorite things to do are swimming and swinging on the playground. She gives her family the biggest smiles when her brother and sister are around, playing and talking to her. She gives out squeals when she hears her grandpa on the phone or when she knows they are taking a trip to the farm.
Taylor is currently followed by neurology, gastroenterology, endocrinology, general surgery, nephrology, pulmonology, ophthalmology, ear, nose, and throat, physical medication and rehab, orthopedics, genetics, and cardiology. Charmayne states that “Being from the small town of Langford, the fact that we can drive three hours and walk into the Castle, seeing all of these specialists on one campus, is rare and something we will never take for granted. The Castle having teams that work together makes inpatient stays that much calmer as well.”
It’s easy to imagine how special the Sanford Children’s Gala was to the Coles, having provided such amazing care for their precious Taylor. The foundation raised $1,266,710 that will directly impact The Castle of Care, Boekelheide NICU and patient care. 100% of every dollar raised will help provide world-class care for local kids, close to home.
Charmayne also did some research and found that Sanford Children’s Hospital cared for 25,163 kids from our tristate area in 2023. Broken down into surrounding counties, the count is 35 from Marshall County, 78 from Day County, 141 from Roberts County, 345 from Brown County. That is a lot of local kids receiving topnotch care, just like Taylor.
