

Jace Ewud
Jace was born full-term in Florida on October 5, 2023 after a completely typical pregnancy. He was a seemingly healthy baby boy (outside of a tongue tie and poor latch) up until he caught Covid at 3.5 months old. This is when life as we knew it instantly slipped out of our grasp.
Despite having Covid, he had minimal symptoms, so we were riding it out at home. On day two of the illness, I started noticing some twitch-like movements in his limbs accompanied by manic laughter fits and I became concerned. As a first-time mom, I wasn’t sure what was and wasn’t normal - but my gut told me something wasn’t right. I kept a close eye on him, and finally decided it was time to get him checked out by a doctor.
By the time I placed him in his car seat to head to the ER, his whole body started rhythmically twitching/jerking and his legs and lips turned blue. Thankfully an ambulance arrived within minutes, and after a traumatic 30+ minute seizure that was extremely hard to control, we made it to the hospital. We had feared for his life. However, the ER doctor nonchalantly told us since Jace had Covid, he must have consequently had a complex febrile seizure. We were sent home within hours with simple instructions to manage his fever with Tylenol.
However, the very next day we noticed the “twitches” return in his arms and legs. We brought him back to the ER and were not taken seriously. We were told “babies do weird things” over and over again. Mother’s intuition is real - and in my gut I knew this wasn’t just a “weird baby thing.” My husband and I kept bringing him back to the hospital until they decided to transfer us to John’s Hopkins All Children’s to do an EEG. This is when we found out that the twitches were, in fact, not normal; they were classified as myoclonic jerks (seizures).
Even still, we were told by a paediatric neurologist that his seizures were so minor and harmless, that we could essentially ignore the seizures and carry on with our lives. He said Jace would grow out of this and even said if we see the movements again, no big deal - no need to come back to the hospital!
But we were back two days later when the seizures drastically increased and worsened.
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For months, Jace was having anywhere from 10-100+ twitches a day. Eventually, these seizures frequently escalated to status epilepticus, and he was intubated for the first time. This is when the Genetics Team was finally looped in and a genome sequencing screening was done.
A few weeks later we got the call informing us that Jace had a mutated CRELD1 gene. We were devastated, and at the time Google hardly had any information out there on CRELD1. We were scared, confused, and desperate for clarity.
Thankfully, we were connected with the CRELD1 Warrior Facebook page and were immediately accepted as family. We shared stories, all of which were eerily similar. But we were no longer alone in this!
Since then, Jace has been in and out of the PICU too many times to count due to status epilepticus; he sometimes seizes for 2-4+ hours at a time. He has been intubated three times and was put into an induced pentobarbital coma in August of 2024. However, he no longer has daily twitches/seizures! He is on four seizure medications.
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Outside of the epilepsy, we noticed Jace was not meeting his physical and neurological milestones. He had - and still has - poor head control, cannot yet sit up, walk, talk, etc. He is constantly having to relearn basic skills after each hospitalization. He actually just started rolling over again - he is so resilient!
He is in physical, occupational, and speech/feeding therapy. At 10 months, Jace failed his swallow study (silent aspiration) and had a feeding tube placed. He does not take anything by mouth currently. He also has an undescended testicle, torticollis, a lip tie, a split uvula, and a suspected submucosal cleft palate.
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Despite all that he has endured, our Super Jace is the most loving, smiley, snuggly, determined, resilient, silly, brave boy. His personality is starting to really shine and we are grateful to God for every second we get with him.
Fighting for Jace is our greatest honor as parents, while simultaneously being the most heart-breaking thing we have ever had to do.
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He may have an ultra-rare diagnosis, but it’s his love and joy that is one in a billion!




