Parents of 2-year-old child with rare medical condition search for answers

Parents of 2-year-old child with rare medical condition search for answers

BILOXI, MS (WLOX) - Looking at MacKenzie, you see a happy and active 2-year-old keeping her parents on their toes. What you don't see is that she has one of the most rare medical conditions in the world.

After being born premature, McKenzie's parents Daniel and Jade Bozeman knew something wasn't right.

"At six weeks old I took her to the hospital and they ran some tests on her," said Jade. "They told us we don't know what's wrong with her, but we can't help her here."

For the next five months, Daniel and Jade took their daughter to doctors all over the country before learning what was causing MacKenzie to be sick.

"It's called Cantu syndrome, and it leaves the potassium channels open," Jade said.

The irregular potassium levels cause complications for most of MacKenzie's major organs; including her kidneys, liver and heart. She has regular seizures and her immune system is extremely weak.

Because there are only around 50 known cases of Cantu' syndrome in the world, finding treatment isn't easy.

"You go to doctors and they run in there and Google it, and they know just as much as you and me know," Daniel said.

The treatments that are available come with a huge cost.

"The last time she was in the hospital she was receiving a high end antibiotic and it was just at $6,000 a dose and she was getting it four times a day for 21 days," Jade said.

The price it's worth it for the Bozeman's, who call MacKenzie their miracle baby.

"They told us she'd be blind, she wouldn't ever walk, she wouldn't ever talk; she's proved a lot of people wrong," Daniel said.

"Right now she looks great and things are great and then other days it gets bad and we don't know what it's going to be like tomorrow," Jade added.

Whatever tomorrow brings, Daniel and Jade are embracing the journey. They want to tell MacKenzie's story to raise awareness about such a rare condition.

"I try to stay as positive as I can," Jade said. "If she can stay positive through it and happy there's no reason that I can't. She's very very strong and we have to stay strong for her."

Part of staying strong is keeping hope alive that solutions will be found to help Mackenzie beat the odds.

"She's been to the doctor more in two years than I've been in 42 years," Daniel said. "I'd like for her to be healthy and normal."

If you want to help McKenzie, you go watch racing at the Gulfport Drag Way on Saturday. The Race for MacKenzie starts at 1 p.m. and all proceeds will go toward her medical costs.

You can follow her progress on the Facebook page Keeping up with MacKenzie:

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