Meet Halle: 2020 Family Advocacy Week Champion
Halle is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Halle and her family will share information about her health journey, Prisma Health Children's Hospital–Upstate’s role in providing Halle with necessary health care services, and why the public and our elected officials must invest in the future of kids like Halle.
Halle's mom had a normal pregnancy, and although Halle was tiny when she was born, it wasn't obvious that she was not developing normally until she was 2 or 3 months old. She couldn't hold her head up until she was 1 and began having infantile spasms.
“Things were difficult at first as we began to realize how dramatically our lives were changing due to Halle’s illness,” her mother, Cathy, says. “It was an incredibly emotional and challenging journey of learning and acceptance.”
Halle went through every genetic test available, multiple MRI and CT scans, muscle biopsies, EEGs, and extensive blood work before the family received a diagnosis. Despite these numerous tests, the family did not get a formal diagnosis until Halle was 8 years old.
She was eventually diagnosed with a rare genetic disorder on the CACNAIC gene. This disorder is so rare it does not yet have an official name, and Halle is the only known person in the world with this disorder. She also suffers from epilepsy, low muscle tone, and long QT syndrome—a disorder that can potentially cause fast chaotic heartbeats.
Over the years, Halle has been hospitalized for seizures, pneumonia, and various respiratory illnesses. Her care is coordinated through a special clinic for medically fragile children where telehealth options have proved vital during the pandemic. The family relies heavily on Prisma Health Children’s Hospital-Upstate in Greenville, South Carolina, for ongoing care including cardiology, neurology, respiratory therapy, genetics, and now palliative care.
“We want the world to know just how special Halle is—to us and our medical community. And we also want the world to know how vulnerable she is to COVID 19.”
Halle is now 10 years old, and despite her seizures, she is calm, steady, and happy. While Halle is non-verbal, she finds ways to communicate when she is hungry or happy. She is not able to walk or talk but she smiles a lot and has a kind presence. She loves snuggling, watching movies, reading books, and playing with the iPad. Halle is surrounded by a loving family and a strong team of pediatric specialists at the local children's hospitals.