Barron Miles is preoccupied with making the Ottawa Redblacks’ defense among the best in the Canadian Football League, but he also has bigger worries.
The 52-year-old defensive coordinator is concerned about his 29-year-old eldest daughter, Raven, who attended a Los Angeles college and remained to pursue an acting career despite her kidney inflammation from lupus nephritis.
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His thoughts are focused on his 23-year-old son, Barron Jr., a wide receiver for the Grambling State University Tigers, who is making his way back to the field following a challenging four years of hip reconstructive surgery.
Moreover, he met his rock-solid wife Jennifer while both of them were students at the University of Nebraska.
The mother of Miles’ three children is a Chandler, Arizona resident with stage four endometriosis. She also suffers from interstitial cystitis (IC), a painful bladder condition, and scar tissue throughout her abdominal cavity, which has resulted in some “scary moments” of internal bleeding.
Jennifer, who requires weekly therapy and has undergone several operations, had to resign from her work to take on the role of full-time caretaker for Ava, the 21-year-old daughter of the Miles, rather than due to health concerns.
Barron is thinking about Ava a lot right now.
On Thursday, Ava was transported by air ambulance from Chandler to the Cleveland Clinic in Ohio, accompanied by Jennifer. That same day, Barron was playing for the Redblacks when they won in Calgary, extending their winning streak to five games.
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She saw surgeons the following morning, and they planned a course of action to treat her severe gastroparesis, which is a paralysis of the stomach with potentially fatal consequences.
To be able to do his work with such excellence in spite of such significant distractions is a testament to Barron Miles’ character.
During a Friday night call from outside Ava’s hospital room, Jennifer stated, “He has a hard time talking about any of it.” “It must be difficult for him to be up there and away from us during this time, but regrettably, bills must be paid as well. One of us needs to continue working.
The bills are enormous, as anyone familiar with the American healthcare system will attest.
Even though the air ambulance alone cost $40,000, the Cleveland Clinic provided hope and Ava was in too much of a condition for any other kind of conveyance.
When asked about Ava’s past, Jennifer remarked, “She started having some issues at 16, where she started to vomit uncontrollably and just could not stop.” It required nearly three years and numerous visits to various physicians for a correct diagnosis. There are many levels of severity for gastroparesis, and sadly, she has a very bad case.
“To find out how quickly your stomach empties, they performed a stomach emptying test. Hers was quite severe, and after five hours, she had hardly broken down any food. In other words, basically, if she attempts to eat, it just sits in her stomach where it eventually goes bad—for want of a better word—and your body begins to reject it. Which is why she begins to throw up.
“When she was first diagnosed, we were informed that there were approximately six distinct stages of surgeries, drugs, and treatments that we could perform. However, don’t worry—very seldom do they reach the end of those six phases. She simply kept getting worse as we reached the end of those last year.
“Everything has been attempted, including a gastric pacemaker, which functions similarly to a heart pacemaker but is implanted in the patient’s belly. When an impulse reaches the stomach, the stomach contracts in an attempt to make the device function. She had a PICC line feeding and underwent CTP (Computerized Tomography Cerebral Perfusion Analysis). Through her IV, she received only calorie-rich liquids. After roughly a year of trying that, she started to really get ill around six months ago. She now has a J-feeding tube installed, but she is not eating anything at the moment. She receives both her IV drugs and her daily fluids through a port.
“Over the past six months or so, as things have gotten worse, she has been experiencing life-threatening complications. She has also experienced blood infections that resulted in her becoming septic, so that was a really frightening situation,” Jennifer added. Because she’s been so dehydrated, she’s had problems with her electrolytes. For instance, her potassium level dropped to 2.4, which is dangerously low. Even in the hospital, they struggled to get that up. And after that, she started to have various problems as a result of malnourishment, including hair loss.
“At one point, the doctors in Arizona told us that there was nothing more we could do for her and that she would just keep on vomiting because it is simply unhealthy for a human to vomit so much. We’ve tried everything here.” She had been throwing up up to twenty times per hour for months on end. “We believe we need to get you a higher level of care,” they stated, referring to the gastroparesis specialist at the Cleveland Clinic.
When Jennifer isn’t by Ava’s side, she can sleep in a hotel that is connected to the clinic.
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Barron undoubtedly wishes he could spend more time with his family.
Jennifer commented, “I think it’s very tough on him.” Many people have told me that it must be difficult to be down here by yourself with her. And to be very honest, I tell them, I think it’s worse for Barron because I get to spend so much time and witness what’s going on every day because I’m with her.
“I believe that being up there and far from his family is much more difficult for him. In any case, it’s challenging, but in trying times, it’s really challenging. The only thing that, in my opinion, truly pulls us through is that, this year, when he was about to return to camp—you know, it’s difficult to leave—he expressed regret about having to go up there. I explained to him that at difficult times, particularly when you’re the ill one, all you want is for things to return to normal.
And the best thing he could do, in our opinion, and the way he could help us the most, would be to travel to Canada, enjoy himself among the coaches and players, and resume enjoying football so that at the end of the day we could watch the games and chat with him, and he could be looking forward to practice. We can observe him triumph.
“Though the kids were born in Montreal during his playing days, it’s those kinds of things that give us some normalcy,” Jennifer continued. Thus, they are unquestionably CFL kids. That’s typical for them, am I right? They seem to enjoy it because it transports them to a more pleasant period of time. As ridiculous as it may seem to some, his presence up there serves as inspiration for us and provides us with a sense of normalcy.
Of course, the Redblacks are well aware of Ava’s illness and the difficulties facing the family. Through his social media account, linebacker Adarius Pickett has encouraged her, and other players have mentioned feeling even more motivated because they are competing for their cherished defensive coordinator and his family.
They are supporting the Miles clan during their difficult times by playing hard and winning.
“Actually, we’ve watched every game this season in the hospital while Ava has been in her bed,” Jennifer stated. She was a little too unwell to see one because she had recently recovered from surgery, but she watched the others with me. Furthermore, it’s encouraging to see the entire team succeed. Of course, we give the defense extra props.
“Winning makes everything much simpler, but it’s still enjoyable to see him play and watch the players perform well when the team is on the field. That’s thrilling. Those are the enjoyable times.
In addition to experiencing the worst nightmare that any parent can have while witnessing their child struggle to survive, the Miles require assistance in managing the mountain of medical expenses.
This summer, Kim Weeks, Jennifer’s sister, spent a few weeks in Arizona while Ava remained in the hospital. Upon witnessing the severity of their financial difficulties, Kim determined they required assistance.
She then created a GoFundMe page.
Jennifer added, “She was there when the doctors came in and said that they’ve done everything here for her.” “Just wanting to do everything in our power to save Ava, and seeing the fear in Barron, me, and our other two children.” She also made the decision to start it when the insurance company rejected our request for an air ambulance to take her to Cleveland for treatment.
“The way it operates is that individuals may visit the website, make a donation, or even just share it if they would rather not give money. Even sharing contributes to our cause. After the money is all transferred to us, we can spend it anyway we see fit on Ava’s medical need.
“On Wednesday, we had barely enough money to cover the cost of our flight out here. By that day, we had just enough raised for me to be able to wire it over, transfer it, and cover it. The air ambulance team was just outstanding, and that was a big assistance. She has some problems with her heart rate, and they have control over everything. She started experiencing tachycardia, but they managed to manage it, administer her pain and nausea medication, and take her straight to the hospital.
“To be honest, it would have been extremely difficult to have that happen without the GoFundMe.”
Barron, Jennifer, their friends, and their football family are left to pray for a positive prognosis, in addition to the constant influx of medical bills.
Pausing to keep her cool, Jennifer stated, “That’s what we’re hoping for right now, which is why we are doing everything we can and got her to Cleveland, and will continue to do everything until she gets the health care that she needs.” You will stop at nothing to protect your child. The hardest thing, in my opinion, at the moment is that we are unsure and therefore in a state of limbo. Before they decide exactly what to do for her, she needs to undergo more testing and consult with other doctors here in Cleveland.
A few operations are being considered for the future. All we can do is wait to see what results some of these tests produce. We hope you don’t have to visit the first one because it is a little more intrusive, but ultimately, you will do what is necessary.
Article content: “We genuinely want her to regain her quality of life and we want her to be healthy. She ought to be going to school, pursuing her aspirations, and hanging out with her pals at age 21 instead of working and going out. And it’s rather difficult to watch her unable to get out of bed or engage in activities that a typical 21-year-old would enjoy.
“We hope to identify an underlying illness that they can cure so that everything improves. It would be wonderful if she could get along without a feeding tube. It would even be better if there were just a few minor adjustments made so she could live a somewhat decent existence.