Laila W, age 7

Photograph by Mackenzie Allen (2023)
Laila likes all things girly! She is in a dance class for special needs children where they refer to her as the sassy diva. Always dressed in something sparkly with a matching bow, she has the most energy in the room. She loves to play dress up at home with her dolls as well. She also enjoys building tent cities throughout the house with her brother.
At just three days old, Laila started presenting seizure-like symptoms. At age one, there was no clear diagnosis. The next year and half included multiple tests, a team of doctors, and a genetic study. Finally, a diagnosis of alternating hemiplegia of childhood was made.
Laila symptoms include severe seizures, dystonia (uncontrolled muscle contraction), severe nystagmus (repetitive, uncontrolled eye movements), heart problems, and apneic episodes. She often goes in and out of paralysis—which can last for minutes, days, weeks, or months. Regardless, Laila typically has a full vocabulary, walks without assistance, feeds herself, and loves to dance and sing. In 2019, Laila suffered her first real seizure with caused her to stop breathing. She was placed on a ventilator for 22 days. Since then, she has had severe apneic episodes and seizures which all required life-saving measures and ventilation. In March of 2023, Laila suffered a severe seizure that affected her ability to walk and talk. She experienced brain damage, and it is uncertain if she will return to her former independent self.

Laila’s mom, Whitley, is inspired by her daughter’s strength and willpower. “She has taught us to enjoy every moment because life moves fast, and it is never certain what the next minute holds. Laila reminds us of what true strength is, and how to have faith no matter the situation. Laila is the definition of perseverance.”  

Family Connection of South Carolina provides services and resources to families who have a child with a disability or specialized healthcare need. Since 1990 we have served more than 100,000 families and today our services are needed more than ever. We focus on parent-to-parent support, guidance with navigating the complex healthcare system, and assistance with school meetings and special education plans.