Our 2 1/2 year old daughter, Aila has Aicardi syndrome, a rare genetic disorder that primarily affects girls and leads to severe developmental and neurological challenges. To learn more about Aicardi Syndrome and the other diagnoses Aila has here are a few good websites to start with:

 Aicardi syndrome - About the Disease - Genetic and Rare Diseases Information Center (nih.gov)

Aicardi Syndrome: What It Is, Causes, Symptoms & Therapies (clevelandclinic.org)

Aicardi Syndrome: Statistics, Symptoms, and Seizure Treatment (verywellhealth.com)

Lennox-Gastaut Syndrome (LGS): Symptoms & Treatment (clevelandclinic.org)

Lennox-Gastaut Syndrome | National Institute of Neurological Disorders and Stroke (nih.gov)

Infantile Spasms | National Institute of Neurological Disorders and Stroke (nih.gov)


Despite these difficulties, her resilience and spirit inspire us daily. We are seeking your support to provide her with the best care and resources to help her thrive.

We are currently seeking support to send Aila to therapy intensives at NAPA Center (https://napacenter.org/). We first heard about NAPA at the Aicardi Syndrome Conference, where we learned about the significant developmental progress other Aicardi girls had made through these intensives.

Aila attended an intensive at NAPA Chicago last September after being on a waitlist and did great! Due to high demand, registration for intensives happens once a year in the fall. Last year, we missed the deadline and were waitlisted. This year, we secured one intensive in November and joined the waitlist for other dates/locations.

Aila is currently in an intensive at NAPA Chicago, which we were informed of with less than a week's notice. These intensives require a $1,000 deposit to reserve a spot, contributing to the overall cost. Costs vary by location; local intensives mean more daily travel expenses, while out-of-state intensives have lodging, time off from work, and long-distance travel costs.

Our insurance covers some of Aila's current therapies, but additional hours or out-of-network services mean higher out-of-pocket expenses. We prefer the Chicago location to minimize costs, but availability sometimes necessitates travel.

Aila's progress in her current intensive is promising. She has been moving her hands and bearing weight on her legs, which is such a huge improvement! She has a chance for a three-week intensive in Denver in October, but expenses are a concern. We plan to drive because of Aila’s equipment and medical supplies. Lodging for the family will cost around $5,000, and the intensive itself may cost over $6000, with insurance coverage uncertain. Aila requires ongoing weekly therapies, and our insurance has an annual limit she will soon exceed, which would reduce our insurance coverage for the intensive.

Despite the planning and expense, these intensives are crucial for Aila's development. She has shown significant improvements, such as better head control and increased hand movements. Completing three intensives this year could help prepare her to receive and use a stander before aging out of early intervention at age three. It could also give her the mobility to be able to participate in equine and aqua therapies.

We are asking for help to cover these therapy costs. We are seeking funding from a program Aila is in, and other various grants, but we don’t know what (if anything) we will be awarded. We need to reserve her spot soon, as balances will be due September 1st and we will not know if any grants will be rewarded until after September 1st. Estimated expenses for the trip are $5,000 for lodging, $6,200 for the intensive, and additional costs for food, travel, and other expenses ($12,000-$15,000 total).

Any extra raised will be used for future NAPA deposits and/or equine therapy, which has also shown benefits for girls with Aicardi Syndrome.