The last few months have been difficult for my friend Tava and her sweet family. Their newborn baby, Tilly, was diagnosed with Aicardi Syndrome, an extremely rare genetic disorder that causes brain structure abnormalities, severe seizures, malformations of the eyes, and developmental disability. This disorder is present in roughly 4,000 girls (and only girls) worldwide. A form of epilepsy, Tilly began having seizures when she was 3 months old, which led to her diagnosis. In addition to these seizures, she is also currently having infantile spasms, a type of seizure associated with abnormal and dangerous brain wave activity that can be fatal if it is not resolved. In short, her life will be an uphill battle, but she is a strong girl. In fact, her name means Strength in Battle. She was born a warrior, and she will overcome, but she could use some help in obtaining the best armor.




With several trips up to Primary Children’s hospital, time needed off work, specialized medical care, and expensive medications, the financial burden for their family is steep, and will continue to be throughout Tilly’s life. She may eventually need a wheelchair, specialized therapies, and additional medical treatments and equipment. Please consider helping Tava, her husband Chris, their two-year-old son Keldon, and most of all, their sweet Aicardi Princess, Tilly, by helping to relieve this financial burden and stress in their lives. Any donations will be gratefully received and used toward the paying of medical bills and other expenses that come from caring for a child with such a rare disability. Above all, they want to be able to provide the best life possible for Tilly and her older brother as they navigate through this unique challenge in their lives!

They are also accepting donations through Venmo.
Venmo name: @Christopher-Waite15