My daughter Lily was recently diagnosed with tethered spinal cord syndrome, a condition that’s already causing her significant pain and developmental delays as she learns to walk and explore the world around her.

Sadly, her coverage through our state’s Medicaid program ends after she turns 18 months old, and the ideal window for this corrective surgery is typically between 12-24 months to prevent permanent damage. Right now, we can’t afford the additional private insurance plan that would cover her needs, as I’m a full-time stay-at-home mom caring for Lily, her big brother, and a couple of little ones from our in-home daycare. My husband works tirelessly running his own small contracting business, but it doesn’t provide family health benefits that include her specialized care.

The estimated self-pay cost for the neurosurgery is around $65,000. The hospital offers a discount for cash payment, bringing it down some, but we’d still need to pay 40-50% upfront just to secure a surgery date. This doesn’t even account for lost wages during recovery, hotel stays and travel to the children’s hospital several hours away, arranging childcare for our other kids while we’re there with Lily, or the ongoing physical therapy and specialist follow-ups she’ll require afterward to help her thrive.

Our upcoming consultation with the pediatric neurosurgeon is scheduled for January 15th, when Lily will be 16 months old—that’s when we hope to lock in the surgery soon after.

I’m fighting every day to give Lily the best chance at a healthy, active future, without the long-term complications that could come from waiting. No child should have to endure this pain or risk further delays when help is possible.

Thank you from the bottom of our hearts for taking the time to read Lily’s story, for sharing it with others, and for any support you can offer. Lily sends her sweetest smiles your way ❤️