My son Koen has a tethered spinal cord and needs to have surgery to fix it as it’s causing not only pain but other neurological delays for him.

Unfortunately his insurance through Medicaid was denied beyond him being 12 months old, and this surgery is most commonly done between 14-18 months old. At this time I’m unable to afford the coverage he would need through private insurance and I don’t have a full time job (I stay home with him and my other children + 2 daycare kiddos). My fiance is a business owner and doesn’t have an insurance policy that can cover him either.

The self pay cost for this surgery is approx $46,000. The hospital will take 20% off for self pay, and I must come up with 40-50% upfront to even schedule it. That cost isn’t even considering the time off work, out of pocket costs for travel to and from the hospital while he’s in patient, help with our other children while we are at the hospital with our son, or any additional therapies and follow up appointments our son will need following the surgery.

Our appointment with our neurosurgeon and our geneticist is on December 30th. My son will be 15 months old. That is when we were originally going to schedule the surgery.

I am doing my best to advocate for my son and also be as proactive as possible so he does not have to live with this condition longer than necessary- which would cause more long term side effects.

I appreciate you reading, sharing, and donating (if you are able). Koen appreciates it as well ❤️