Aicardi Syndrome Treatment: How a Family Battles to Secure Life-Saving Care for 2-Year-Old Toddler
By Harshit | October 6, 2025 | 10:30 AM CDT | Manito, Illinois
For 2-year-old Emmalyn “Emmy” Lazoen, obtaining Aicardi syndrome treatment is a daily struggle that requires therapy, medical interventions, and constant safety precautions. Born with this rare genetic disorder, Emmy experiences seizures, vision difficulties, and significant developmental delays. She cannot walk independently, sit upright for long periods, or hold her head steadily, making even simple daily activities highly challenging.
To prevent serious lung infections such as pneumonia, Emmy requires a high-frequency chest wall oscillation vest, commonly called a “shaky vest.” The device vibrates gently to loosen mucus in her lungs, reducing the risk of infection. Despite being medically necessary, securing insurance coverage for this essential equipment has been a battle.
Challenges in Providing Aicardi Syndrome Treatment
The Lazoen family’s fight with insurance illustrates a broader issue for families of children with rare conditions. United Healthcare initially denied coverage three times, citing the absence of frequent lung infections, the very issue the vest is meant to prevent.
“It’s awful,” said Emmy’s mother, Carrie Lazoen. “No parent should have to fight so hard to get their child the care they need.”
The family then appealed to their secondary insurer, Blue Cross Blue Shield, while continuing the process with United Healthcare. Even a safety chair for bath time, essential to prevent drowning, required lengthy appeals. United Healthcare initially suggested “just wiping her down was sufficient,” but eventually granted coverage after multiple appeals.
When Emmy outgrew the chair, the family opted to purchase a replacement costing $1,800 using donations from her father’s employer rather than face another prolonged insurance battle.
Medical Perspective on Aicardi Syndrome Treatment
Dr. Wendy Burdo-Hartman, a neurodevelopmental pediatrician at the University of Illinois College of Medicine, highlighted the burden on healthcare providers and families.
“These denials force parents to fight for things no parent should have to,” Dr. Burdo-Hartman said. “We spend hours preparing letters of medical necessity, contacting vendors, and navigating insurance bureaucracy. We’re not asking for anything beyond standard care for kids with these disabilities.”
United Healthcare confirmed that all claims were approved once proper documentation was submitted. After media attention, the insurer assigned a dedicated case manager to ensure Emmy could access the vest after three rentals.
Understanding Aicardi Syndrome
Aicardi syndrome is caused by a mutation on the X chromosome and primarily affects girls, as male embryos with the mutation rarely survive. The disorder results in structural brain abnormalities, seizures, vision problems, and developmental delays, making specialized medical care essential.
Children with Aicardi syndrome often require physical, occupational, and respiratory therapy, alongside medical devices like the shaky vest. Early intervention and consistent care are critical for maintaining quality of life.
The Lazoens’ Daily Journey and Hope
Despite these obstacles, the Lazoen family has adapted to Emmy’s needs. They use eye-tracking devices for communication, carefully planned bath routines with specialized chairs, and meticulously monitor daily therapy schedules. Each step reflects their perseverance and determination.
“This is about more than insurance,” Carrie Lazoen said. “It’s about giving our daughter the life she deserves and the care she needs.”
Emmy’s story highlights the challenges of accessing life-saving Aicardi syndrome treatment, the resilience of families, and the importance of advocacy, early intervention, and specialized medical guidance.
