Hi friends and family,

i am staring this page for a sweet boy named Jace. Him and his family have been going through so much in the last few months. He continues to have frequent seizures and is now currently in the ICU intubated. He has the sweetest little family and they need support with the medical bills. Please read below the story his mom posted recently on Facebook.

"Jordan and I wanted to provide an update on Jace’s health journey. We appreciate the continued prayers, love, and support!

As most of you know, Jace has been battling severe epilepsy for the past 6+ months. Thank God, we’ve been able to control his seizures the past 1.5 months with a handful of medications. (Edit: after posting this, Jace sadly and ironically ended up in status E. He is currently intubated)

When Jace was 6 months, he was intubated and put on a vent after he went into status epilepticus. During this hospitalization, Jace’s genetics team decided to do a genome sequencing test. We were trying to figure out the cause of his seizures, and we crossed everything off the list outside of genetics.

We received the results a few months back, but haven’t openly shared them as we didn’t fully understand what they meant.

Jace has a mutated CRELD1 gene. You probably don’t know what this means, and neither does most of the medical world (yet). Jordan and I are still learning ourselves. This is a very rare mutation; at the time of diagnosis, there were only 18 other known patients. A doctor at Yale connected us with a CRELD1 support group, which has helped us feel less alone but also made this feel so much more “real.” There are a handful of beautiful children with variations of this mutated gene, too many of whom are now angels. "

as he now is back in the hospital and intubated, we are praying for him to come out of the hospital, healthy, and for them to be able to control his seizures with medication's.

We are very grateful to now have people that we can relate to and lean on for support. No one understands this pain and confusion outside of those that have lived it.

All of this to say, we are struggling and this is a very hard reality to accept. We love our little superhero so much. We will be praying for strength, comfort, wisdom, healing, answers, guidance, and for the other families going through this with us. Jordan, myself, and our families hope that you’ll join us ❤️‍

What’s next? We’re working on figuring that out. As of now, there is no “cure” or gene therapy. We will treat symptoms as they arise and stay proactive. I can tell you there will be lots of therapy, doctor appointments, and prayer! I am on a personal leave at work, and am very fortunate to be able to focus solely on Jace’s well-being for a few months. We will look to create joy in each day that we get with Jace. He makes that part pretty easy

(Also, we apologize if we haven’t personally told some of the people we are closest to or related to. It’s just easier to share this once. We love you all and appreciate you regardless. Knowing so many people care about Jace is so comforting to us )