Join The Battle

Tilly's complex medical needs have, unfortunately, come with significant financial cost, and her needs will continue to incur those costs throughout her entire life. Trying to get her onto government assistance programs has been difficult and, thus far, unsuccessful. While we have had generous donations in the past that have helped make caring for Tilly possible, it has been difficult to keep up with the ever-growing financial burden.

Despite missing several parts of her brain, wildly abnormal brain activity, and global developmental delays, she was denied Social Security Disability. This was during the beginning of COVID, when Social Security offices were closed. Because she is a minor, we were told that an appeal of the decision had to happen in person, and we had 60 days to do so. The offices did not reopen during that time, and the decision became permanent. We are still seeking a lawyer that will take her case to fight this erroneous decision. In addition, she was denied Medicaid assistance at the same time, and we have been fighting since then to get Medicaid coverage for her as well.

With her complex needs and complex therapies, the private insurance we have had the whole time has denied coverage for several of her medications and treatments. For example, her tube feeding supplies and formulas have been denied coverage, medications have been denied, imaging and other specialized tests have been denied, and physical, occupational, and speech therapy visits have been denied. Because of this, medical expenses and medical debts have piled up quickly.

With all of this, we are doing fundraising for Tilly and humbly asking for your help. Right now, we have set up a T-Shirt fundraiser where you can buy a "Strength In Battle" T-Shirt to show your support! This fundraiser is running through August, and the T-Shirts you order will be delivered in September. If you would like to donate additional funds, please go to Make a Donation and use one of the options there.

We have Venmo, PayPal, and Zelle accounts set up that you can donate to if preferred.

If you are unable to donate at this time, please share this site with others on social media! The more people that can see Tilly, the more help she can get! We want to raise awareness for Tilly and for Aicardi Syndrome, so please share this site with others!

Thank you for your love, support, and generosity! Every penny received will go toward paying off Tilly's debts, paying for Tilly's medications, treatments, appointments, and surgeries, and covering Tilly's medical expenses in the future!