Expenses for genetic epilepsy testing for Eli

Hello my name is Jamye Carr and my son Eli has had seizures since he was 6 months old.

They are severe and often come on without any warning. We have had him on multiple types of medication with some success and lots of failures. This last year we have had 3 hospitalizations due to cluster seizures where they could not get the seizures to stop even with medication.

The doctors at UNC Neurology have been amazing and supportive but this entire process has been terrifying and difficult. We have good insurance, but even with this we accumulated almost 10k in medical debt. Luckily we are on a payment plan and have managed to pay off $6k of that.

Today we had a follow up appointment following another seizure last week and the neurologist has recommended genetic testing to see if we can figure out exactly what type of epilepsy is involved. We have a meeting with the genetic counselor next week to go over the process and things it can help us with, like identifying a better medication or triggers.

Unfortunately this genetic testing and counseling is not covered by insurance and will cost us an additional $3k or more. We are hoping that family and friends and others are able or willing to contribute to our campaign to fundraise the money we need for this testing.

Eli is an amazing kiddo and we want to do everything in our power to make sure he is able to live a healthy and happy life, hopefully with no more long hospital stays!

Thank you so much everyone!