The Bowies believe life is an adventure

OKEECHOBEE — When a family lives in an RV and has the motto that “life is an adventure,” you get a certain picture in your mind, and that picture does not usually involve cancer or melted corneas or encapsulated livers, but for the Bowie family, those things are just part of life’s adventure. Kevin and Jeannette Bowie have been happily married for 22 years, but during their marriage, they had 10 miscarriages said Mrs. Bowie, and they lost one baby boy at 28 weeks. They finally had their oldest daughter Alenya nine years ago, and everything was wonderful. They even built a home in Texas. Mr. Bowie had a good job with Aetna, and Mrs. Bowie started a sewing business called Pumpkin Butts — making everything from wedding gowns to kids’ clothing.

Special to the Lake Okeechobee News
After Kevin Bowie’s doctor moved to Florida, the family followed him in the hope that Mr. Bowie would soon be able to receive a cornea transplant. He is one of only two people in the world known to have ocular rosacea resulting in corneal melt. Pictured are Jeannette and Kevin Bowie and their two daughters, 9-year-old Alenya and 2-year-old Callie.

Life began to get really challenging for the Bowies in 2012 when Mrs. Bowie found out she had ovarian cancer. “Alenya was my chemo buddy,” she said. Mr. Bowie had to work, and Alenya would keep her company while she had her treatments. She went through treatments from 2012-2016, and then found out she was pregnant. “The doctors wanted me to abort,” she said. “I just couldn’t do it.” A week later, Mr. Bowie was laid off from his job at Aetna.

Surprisingly, after so many miscarriages, she carried baby Callie with few problems, but when she was born, they discovered she has three discs protruding on her back and she has extra tissue encapsulating her liver. They need to remove it, but they want to wait until she is older, said Mrs. Bowie. It causes her organs to pull up tightly into her chest and causes trouble with her breathing. She also had a severe lip and tongue tie, and had surgery for that when she was 21 days old.

Callie does not process food. As she gets older, her liver might straighten out and pull away from the tissue, and that might help food to process better but right now, she needs breast milk to help process it. When any other child eats an apple, they get all the nutrients they need out of it. It takes Callie six apples to get the nutrients she needs. Her body does not pull the nutrients she needs from the food, and because she cannot produce it herself, Mrs. Bowie begs, borrows, and buys breast milk from other moms to help Callie because that is the only thing that helps her digest food. If she does not have it, her tummy hurts when she eats and she even vomits blood. Doctors recommend she stay on it until she is at least 3 to 4 years old. She is 2 years old now.

In addition to these problems, Callie has to have CST done which her mother describes as cracking and moving her skull to separate it. Just the idea is enough to make one shudder. She said they did this to her baby for two years, but her pediatrician moved away, and when a new one tried it, he made her bleed for eight weeks, and Mrs. Bowie said no more until they find someone who knows what they are doing. Being attached back there can cause speech impediments because she can’t move her mouth properly. It can also cause difficulty eating and possibly choking. They have to watch her very closely. She can aspirate and her lungs can seize up.

Callie also needs a dentist who has experience with children who have been exposed to chemo. As her teeth come in, every one of them have completely crumbled into dust. The last dentist they talked to basically said they should have aborted her.

While Mrs. Bowie was attempting to deal with these problems with her newborn, Mr. Bowie was going through some strange things as well. At first, he began having trouble with what he and the doctors thought were allergies. His eyes became very red, inflamed, and runny. Mrs. Bowie said no matter what they gave him, they got worse. He was out looking for work, and no one would hire him because he looked terrible. She said his eyes looked like the inside of a watermelon, and they were oozing and disgusting. Would you hire him? He was even getting allergy injections, and now they think those triggered what ended up happening.

By the time Callie was 6 weeks old, he was sick in bed with a 104 temperature. When they finally got him to the hospital, he coded on the table, and everyone just kept saying allergies. His entire face was oozing. His kidneys were shutting down. His liver shut down. He coded for 47 minutes, and they thought they lost him, she said. Finally, a doctor named Jonathan Jan figured out what was wrong. They believe he has optical rosacea which caused his corneas to melt. He is one of only two known cases in the U.S. to have ever had this happen, and they wrote about him in the American Medical Journal. If anyone would like to read about it, it can be found by Googling African American melting corneas. They finally brought it under control with steroids and antibiotics. They attempted a transplant, but his body was too unstable at that time.

Soon after that was controlled, Mr. Bowie developed another frightening condition called Hidradenitis Suppurativa or HS. It’s estimated that 200,000 people in the U.S. have moderate to severe HS. HS is a chronic inflammatory skin disease characterized by recurrent painful lesions often misdiagnosed as infections. They can get up to grapefruit size, and there is nothing you can do about it, said Mrs. Bowie. They get so big that he has to have them cut out and stitched out. It’s an autoimmune disorder that came along with his other problems.

When Mr. Bowie lost his job and became so ill, they lost their home in Texas. It was foreclosed on, not by a bank, but by their homeowners association, she said. What hurt the most was on the last day when they went to get the last of their belongings, the man who had foreclosed had thrown away her baby’s ashes and refused to tell her where he threw the urn. “Why would you do that?” she asked. “Who would do such a thing?”

It took two and a half years to get Mr. Bowie approved for disability. He has so many diagnosis that should have been approved immediately, but they had to fight every step of the way. She sent 118 emails to the Senate in Texas, and she sat on their steps for 22 hours banging on the doors begging for someone to review his case, when finally someone said, “We need to expedite this. He is legally blind. How was he not approved already?”

When they finally got the back pay he was owed, they received word Dr. Jan, the only doctor who seemed to know what was wrong with Mr. Bowie and how to fix it was moving to Plantation, Fla. Dr. Jan said, “Come with me. I’ll fix him.” The Bowie family didn’t have to think about it for long. They had no home anymore, but they still had each other. They decided to follow the man who might be able to help. Mrs. Bowie began calling around and discovered the opportunity to “work camp” at KOA. She loves it, she said. She works in house keeping, and they camp in the park in an RV.

Alenya, who loves science and plans to be an entomologist when she grows up has been volunteering at Arnold’s Wildlife Rehabilitation Center every week, and thanks to a friend’s generosity, is able to take Jujitsu classes in Port Saint Lucie.

The Bowies can be reached on Facebook or at 682-540-7213.

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