It was a good day for Jennifer Miles. There was only one medical appointment on her agenda and she had time to speak with an old friend from Montreal.
“You never think you’re going to have to deal with something like this with your child,” an emotional Miles said from her home in Chandler, Ariz. “It’s hard. It’s tough when it’s your child and you can’t fix it. Watching her suffer. Knowing that she’s scared and how much she’s suffering is really hard. As a parent, you just want to make everything better. You want to fix it for them.”
Ava Miles, 23, suffers from median arcuate ligament syndrome (MALS), a rare and debilitating condition characterized by persistent pain, nausea and vomiting. Most of her days are spent in bed, receiving nutrition from a catheter in her chest.
The illness began at age 16 when she was diagnosed with gastroparesis — a chronic digestive disorder where the stomach takes too long to empty its contents into the small intestine. This has led to severe gastrointestinal and vascular complications, repeated hospitalizations and multiple bouts of sepsis, an extreme, life-threatening reaction to an infection that causes the immune system to attack healthy tissues and organs, potentially leading to organ failure and death.
“That’s the hardest part, seeing her in pain. It’s absolutely heartbreaking,” Miles said of her youngest of three children — two of whom were born in Montreal while her husband, Barron, was a from 1998 until 2004. “That and the gastroparesis cause vomiting. The vomiting makes the pain worse. The pain causes more vomiting. It’s a vicious circle.
“She’s 23. She should be dating and working, having her own apartment and exploring the world. Instead, she’s in bed, being fed through a tube. It’s heartbreaking.”
Their daughter requires life-saving surgery at the Cleveland Clinic in Ohio this August, but the family’s insurance carrier has repeatedly denied claims because the procedure will be performed out of state. At least US$400,000 is required to cover the cost of the surgery, air ambulance, continued care and testing, medication and accommodation.
Ava Miles, 23, is battling median arcuate ligament syndrome, a rare and debilitating condition characterized by persistent pain, nausea and vomiting. Courtesy of Miles family
To complicate matters, Jennifer has her own health issues and suffers from Stage 4 endometriosis — a chronic condition where tissue similar to the lining of the uterus grows outside the area, leading to inflammation, scarring and severe pelvic pain.
While monitoring her own health and dealing with her daughter, Jennifer has been handling the situation virtually alone while her husband remains in Calgary, serving as the Stampeders’ defensive backs coach. That’s the family’s only income after Jennifer was forced to quit her job as a personal trainer.
Like many CFL families, the wife must serve as the foundation and rock star of the marriage while the husband, often located away from the family home, plays or coaches. Barron and Jennifer, who met when both were at the University of Nebraska, have been married 30 years.
While Barron was reluctant to discuss his daughter’s plight, he was more than eager to laud his wife for holding the family together.
“She’s doing a great job keeping all the pieces together,” he said. “She doesn’t get enough credit, because this event seems like it’s never-ending. She has her breakdown moments — and that’s when I come in, trying to keep her spirits up and assuring her things will work out. Sometimes she just wants me to listen and say it’s going to be OK.
“My daughter loves me and football. She wouldn’t want me to stop doing what I and our family loves — and that’s football.”
Miles completed his career playing for B.C. from 2005 to ’09 under legendary head coach and general manager Wally Buono. When Buono learned of the family’s struggles earlier this month, he started a GoFundMe campaign. As of Friday morning, nearly $58,000 had been raised.
Buono also contacted Als’ GM Danny Maciocia, who insisted the organization will provide some financial assistance. Miles has coached with seven of the league’s nine teams and was in 2021-22.
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“This situation was brought to my attention by Wally and, after discussing it together, we both felt it was important to support a former player and coach facing a very difficult family situation,” Maciocia told The Gazette. “As parents ourselves, we understand the challenges and emotional strain that circumstances like this can place on a family. The Alouettes would like to help raise awareness of their situation and provide an opportunity for those who wish to contribute and offer support. Any assistance, thoughts or contributions would be greatly appreciated by the family during this difficult time.”
Jennifer isn’t comfortable seeking aid, but the family has exhausted every avenue, liquidating their life savings, selling their car and downsizing. The family has a history of philanthropy, Barron having started school programs that promoted reading and sports, pushing the message to never give up.
“It’s humiliating, asking for help,” she said. “The world’s hard right now. Everybody has trouble and life is expensive. To ask people to help us … Every family in America is one health crisis from financial ruin unless you’re extremely independently wealthy. I don’t know any family that could handle a crisis like this. It makes you realize how little you can live on, how little you need when every penny goes to saving your child.
“We’re just looking for a miracle.”
hzurkowsky@postmedia.com