The CFL community is coming together to take care of one of its own.
No parent wants to see their child sick or in extreme pain but, unfortunately, that has been the reality for Stampeders defensive backs coach Barron Miles and his wife Jennifer. Their daughter Ava has Gastroparesis and Median Arcuate Ligament Syndrome (MALS).
“With Gastroparesis the stomach becomes paralyzed so when she eats, it doesn’t move food through and that causes a lot of nausea and vomiting,” informed Jennifer.
“MALS is where the ligament above the diaphragm is pressing against the celiac artery, and it causes celiac compression and slow blood flow to the digestive organs.”
“It causes a lot of pain even when she breathes. She takes really shallow breaths because it is so painful.
“The best way to describe her daily condition is if you think about how miserable you feel when you have the stomach flu or food poisoning, and she has had that feeling every single day for the last six years. So, for her, that’s the hardest thing. It’s just not a whole lot of quality of life for her.”
Six years ago, when Ava was around 16 years old, she developed sudden vomiting and lost 30 pounds within a month. After trying a few different treatment options, medications and surgeries that didn’t work, doctors put in a gastric pacemaker which sends electrical pulses to remind the stomach to work.
“That did okay for about a year and then she got really sick again and she was in the hospital for about seven months,” said Jennifer. “That’s where things really became a nightmare for us.”
The Miles family was informed that their doctors in Arizona had done all they could and that Ava would need to go to the Cleveland Clinic for a higher level of care.
“She needed an air ambulance to get there because she was battling sepsis, low potassium, malnutrition, and unstable heart rate. She was very, very sick,” said Jennifer. “United Healthcare denied the air ambulance and all of the care because it was out of state, so it was out of network.”
Upon hearing the Miles family have been denied insurance to cover Ava’s necessary treatment, Wally Buono and his wife Sande have set up a GoFundMe campaign to help raise funds to get Ava the care she needs. The goal is to raise $402,000 USD to cover evaluations, surgery and post-operative hospitalization.
Those living in Canada and the U.S. can donate.
“It means absolutely everything,” said Jennifer. “I don’t think I have words big enough to express how much it means.”
Barron and Jennifer first met the Buono’s at the 1998 Grey Cup when Barron was nominated for CFL Rookie of the Year as a member of the Montreal Alouettes, and Wally was coaching the Stampeders.
“Wally and Sande were introduced during a Christian athlete’s breakfast, and they brought their kids out on stage. We were really impressed with them, the kind of parents they are and how they made football a family affair,” said Jennifer. “So, we’ve always looked up to them.
“Then in free agency, Barron went to BC to play for Wally and we developed a close relationship with them.
“We are touched and humbled by their kindness. We have such great respect for them. It’s incredibly moving to know the efforts they have made for our family. Their compassion and generosity will make a huge difference for Ava.”
So far, the GoFundMe campaign has raised $57,990 and counting, including donations from members of the Stampeders and all over the CFL community.
Orlondo Steinauer, Jeremy O’Day and John Hufnagel are just some of many across the league wanting to help the Miles family.
“Our kids were born into the CFL. Even as babies, they were going to the games,” said Jennifer. “We have moved around Canada and they have been in every stadium, looked forward to game day and Grey Cup week, and would go watch Barron practice, whether he was a player or a coach.
“Growing up, all of the players were their football uncles, so, having the support of the CFL community, our football family, is extremely meaningful to our entire family.”
After having a stomach tube removed because it was causing too many complications, Ava is now fed through Total Parenteral Nutrition (TPN), a method of delivering liquid nutrition that bypasses the digestive tract.
Jennifer also quit working to care for Ava full-time. The Miles family also has doctors and nurses who come to their home due to Ava’s condition and to prevent sepsis.
“Being around hospital germs is a risk because her condition makes her highly susceptible to infection so they try to do as much as they can at home.”
While Ava’s life is anything but normal, the family does their best to try.
“It’s tough, but Ava really wanted to keep life as normal as possible,” said Jennifer. “She doesn’t want to be viewed as sick or be a burden. Of course that’s not how we view it, but we respect her perspective.”
“I think it’s helpful to maintain a sense of normalcy in order to create some stability. So, with (our other children) Raven and Barron Jr., we encourage them to keep chasing their dreams and for Barron to continue coaching because that’s encouraging to Ava. We can keep watching the CFL games and have something to look forward to each week.
“Obviously there were family discussions (about him still coaching) because it is a difficult situation,” she said. “I think it’s harder on Barron to be so far away and having to worry every day if he’s going to get a phone call that something awful happened to Ava. I know that weighs on him and it’s also challenging for him to be away when I’m taking care of a lot of it here on my own.”
In the meantime, the family is continuing to share Ava’s story and spread awareness about her conditions.
“Anybody sharing Ava’s story could truly make a life changing difference to her,” said Jennifer. “If a doctor or a medical professional happens to see this story and feel they can help her or somebody reaches out and gives us advice, anything could happen. That’s why we’re trying to get her story in front of as many people as possible.
“We’re absolutely desperate to help her,” she said. “It’s awful as a parent to see your child struggling and suffering and you can’t fix it for them.
“It’s very humbling and embarrassing to have to ask for help. So, witnessing so many generous and compassionate people willing to support our family is not only helpful but comforting.
“I want to express how grateful we are to the Stampeders organization for how supportive they’ve been, as well as the CFL community, the fans, and the staff of the teams that Barron’s been on previously. We are blown away at the response and the support we’ve received.”