In a lot of ways, MacKenzie Bozeman looks like every other child. She seems joyful, and energetic. She gives her parents plenty to keep up with. It would be almost impossible to tell from a glance that MacKenzie suffers from Cantu syndrome. Keep reading to learn more about MacKenzie’s story, or find the full article at WLOX.
MacKenzie was born premature. That was the first sign that something wasn’t quite right. Her parents knew immediately that her health problems went deeper than just being born early. When MacKenzie was six weeks old her mother took her to the hospital for testing. The results weren’t satisfying– doctors were able to identify that there was a problem, but they couldn’t zero in on a diagnosis. They told MacKenzie’s parents they wouldn’t be able to help them.
Over the next months, MacKenzie and her parents traveled all over the United States. They were seeking answers. Through this process they learned that MacKenzie had Cantu syndrome, a rare disorder that causes potassium channels in the body to be stuck open. To learn more about Cantu syndrome, click here.
Finding a diagnosis was difficult. MacKenzie is one of about 50 cases of Cantu syndrome ever recorded. MacKenzie’s father says doctors often know so little about Cantu syndrome that they have to resort to Google searches. When they come back, they usually know about as much as MacKenzie’s family already does.
Finding treatment isn’t easy either. Or cheap.
“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,” MacKenzie’s mother says.
Despite all this, the Bozeman’s believe that it is worth it. The expense, the travel, the difficulty – all of it.
They think of MacKenzie as a miracle. They call her their miracle baby.
When MacKenzie was born and during the search for her diagnosis, the Bozeman’s received a long list of things MacKenzie would never do. She was supposed to be blind, unable to speak, and would never be able to walk. Thus far MacKenzie has proven these expectations wrong.
MacKenzie’s mother says that right now, MacKenzie is looking great. When MacKenzie is doing well, things are good. Not all days are good though. Sometimes MacKenzie’s symptoms get worse. On those days, her mother feels like there’s no way to predict or prepare for the future. MacKenzie’s parents are doing the best they can, and they are embracing the process. They want MacKenzie’s struggles and success to be to told and known. They hope her story will help raise awareness for a nearly unheard of disease.
MacKenzie has been to the doctor more times in two years than her father has in his whole 42 years of life. Depending on your perspective that is either terrifying or exhausting. But the Bozeman’s keep hope alive. They continue to search for a cure, and they continue to be happy living life with their daughter every day.
“I try to stay as positive as I can. If [MacKenzie] can stay positive through it and happy there’s no reason that I can’t. She’s very strong and we have to stay strong for her,” says MacKenzie’s mom.
If you’d like to learn more about MacKenzie’s story, or offer your support you can follow her journey on Facebook on the page Keeping up With MacKenzie.
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