Ana Sofia has a wonderful sense of humor and loves to laugh, especially at anything that makes silly noises. One of her mom’s favorite things is when they’re out and about, and Ana Sofia suddenly starts laughing. It might seem random at first, but if you pause and listen, you can usually figure out what funny sound caught her attention. Her mom says it’s a sweet reminder to slow down, notice the world around them, and find joy in the little things.
Both anticipated and unanticipated, Ana Sofia has faced many challenges along the way. She has a CASK gene mutation, a rare genetic condition that affects how her brain develops, leaving it smaller than usual and causing seizures and developmental challenges. The transition from preschool to elementary school was especially difficult, as Ana Sofia had spent several years at an amazing preschool where she had incredible teachers and aides. Medically, one of the hardest things for her and her family is the uncertainty of what’s next in her journey. Ana Sofia has taught her family to celebrate every win instead of waiting for the next big milestone.
Some of the most meaningful moments for Ana Sofia’s family are things that may seem small but are actually huge accomplishments, like the time she deliberately splashed her sister in the swimming pool or watching her laugh at jokes. She has such a bright, fun personality, with opinions and preferences just like anyone else, and getting to witness these experiences brings her family so much joy. Ana Sofia is an amazing person not just because of her strength and grace through every challenge, but simply because she is herself and is worthy of love, care, and respect just as she is.
Every day, parents of children with disabilities, chronic health conditions, and mental health concerns are faced with the difficulty of trying to understand and access much needed services for their child or loved one. Family Connection of SC is a one stop, parent-led organization designed to meet the individualized needs of families.