KSL GIVE-A-THON

Primary Children’s gives Cammdon a new chance at life

Dec 2, 2021, 10:29 PM | Updated: Dec 3, 2021, 9:45 am

When Cammdon was born everything seemed perfect. He was born full term. He was absolutely healthy. No issues.

But then at 18 months old his health took a turn.

“He was really sick one night in bed….aspirated we gave him CPR. He was taken to the emergency room. Everything seemed normal,” Jessie Edwards, Cammdon’s step-dad said. “And then he started having seizures.”

The seizures then became a constant concern.

“I think watching your child have seizures is one of the scariest things,” Darci Edwards, Cammdon’s mom said. “Because really, there’s nothing you can do.”

“Medicines weren’t helping with it,” Jessie said.

“They really didn’t know what what was going on. He had all the doctors baffled,” Darci said. “We would have breakthroughs where he wouldn’t have seizures. And then we would go months with seizures.”

Primary Children’s Hospital became a second home to them.

“The last stay, we were there from November to February. And it was December 31, that they came in and was like, we’re out of options. We don’t know what else to do anymore,” Darci said.

Brain Surgery seemed like their only option.

“Where they cut his brain in half to try and stop the seizures from bouncing side to side,” Darci said.

But just days before the surgery a breakthrough discovery was made using a relatively new test available at Primary Children’s hospital.

According to Dr. Josh Bonkowsky, Director, Center for Personalized Medicine at Primary Children’s Hospital, “rapid whole genome sequencing is the technology that lets us analyze all the genetic material. So that’s the whole genome part.”

“Oftentimes, we don’t know what’s causing the illness and the genetic tests, this rapid whole genome sequencing, lets us look to see, is there a genetic change that’s causing the illness?” said Bonkowsky.

It was discovered that Cammdon had a vitamin B6 deficiency.

“We’re suspecting that he’s gone three years of life without vitamin B6,” Jessie said. “And the reason why we didn’t see signs of anything, is because for 18 months, he was able to make it work.”

“It was a Sunday night and Jesse had just left to come back home to go to work,” Darci said. “And they called me and the doctor was so excited. She’s like, ‘This is it. We found it.'”“They came back and said, ‘We just found a B6 gene mutation, we’re gonna try to give him a heavy amount of vitamin B6,'” Jessie said. “And I was like, Yeah, vitamin. That’s it. That’s what we’re gonna do. And she’s like, No, really that this is it. And so he’s been seizure free ever since,” Darci said.

That was nearly 2 years ago. The Edwards credit the doctors and other care givers at Primary Children’s Hospital for saving Cammdon’s life.I don’t believe there’s a better hospital,” Jessie said. “They cried with us and they were defeated with us. But they also celebrated with us,” Darci said. “It’s an amazing place,” Jessie said.  “I always said it was the best worst place in the world.”

“I don’t think there’s enough thanks in the world to give to them,” Darci said.

Their journey with Cammdon has given his parents a new perspective.

“My perspective of life is I don’t let the little things get to me anymore, Jessie said. “He’s my role model.”

“It’s made us really celebrate Camden every day in the life we have with him and the true miracle he is,” Darci said.

Primary Children’s hospital provides miracles for so many children. Help children like Cammdon by donating here KSLKids.com

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Primary Children’s gives Cammdon a new chance at life