Three years ago, Brenna Drevlow, 8, walked off her school bus with a limp and a swollen knee, and that’s when it all began, recalls her mother, Jodi. Brenna said she tripped on the bus during the ride home, so her parents thought that her injury was due to a fall. But after several days of watchful waiting, “Something just didn’t feel right”, says Jodi. “Brenna’s knee only seemed to be getting worse, swelling up to the size of [her dad] Joe’s knee.” And though massively swollen and tender to the touch, Brenna didn’t have any bruising — another unusual sign that didn’t add up.
Brenna’s symptoms started showing up in other ways, too. The once energetic five-year old suddenly had trouble doing everything, says Jodi. Perhaps the biggest struggle was getting Brenna out of bed and ready for school. On a few occasions, Brenna’s fatigue and pain would be so bad that Jodi would schedule a doctor’s appointment in a panic. But when it was time for her afternoon appointment, Brenna seemed to be moving about almost normally.
After two months dealing with inexplicable pain and a severely swollen knee, their family doctor suggested that Brenna get her knee drained and biopsied at a pediatric clinic. Because pediatric care is limited in their rural hometown of Thief River Falls, Minnesota, the Drevlows had to drive an hour away to get the procedure done. Once the biopsy results came back, they were finally given a reason for their daughter’s symptoms: Brenna had polyarticular juvenile idiopathic arthritis.
Unfortunately, having an answer didn’t bring an immediate solution. The first year of treatment proved challenging. While her joint pain and fatigue responded fairly well to medication, Brenna’s uveitis, or inflammation of the eyes, was very difficult to manage. The Drevlows drove Brenna to a pediatric rheumatologist six hours away every month, for 13 months in order to treat her worsening vision and extreme light sensitivity. During that time, different medications would help temporarily, but her uveitis symptoms would return. After months of exhausting the possibilities, Brenna’s doctor decided that wearing transition lenses (a prescription eye product that addresses vision problems and darkens when exposed to sunlight) would be her best bet.
This solution was not automatically covered in the family’s insurance plan, as most insurers consider it a luxury item rather than a medical necessity. This wasn’t the only insurance challenge they experienced. After realizing they qualified for Medicare under the Affordable Care Act, Joe switched to a $54 a month plan offered by the Exchange. Although the family’s monthly premiums were drastically lower, getting Brenna’s medication on time was another challenge, says Joe. Brenna requires a shot every two weeks, but the pharmacy would only ship her medication every 28 days, making her consistently late with one dose every month.
So the Drevlows had to decide if they needed to switch back to an employer-sponsored insurance plan that would ensure timely prescription delivery.
Their choice was complicated by a significant detail. Brenna is one of 11 children, ranging from the ages of 4 to 22. They decided that Jodi would continue being a stay-at-home mom rather than paying for costly child care programs. This meant that Joe, in addition to running his own insurance agency, had to take on another full-time job to get insurance benefits. It’s not an ideal situation, but it allowed them to provide Brenna and the rest of their children affordable health care, says Joe.
Despite the challenges, the Drevlows channel their hardship and frustration into positive acts. “We want to take away the pain, and the effects JA has had on our family, but we can’t do that,” says Jodi. “Instead of dwelling on what we can’t do, Joe and I decided that it’s better, for Brenna and the rest of our family, to focus on what we can do to make a difference.”
For the last three years, the Drevlows have hosted bake sales, petitioned government officials, and have participated in Arthritis Foundation conferences and events, such as Jingle Bell Run
Their team, Brenna’s Brigade, is one of the top-raising teams in their state, and a testament to the strong community they have formed through their charitable efforts.
“It’s a little bittersweet how we’ve all come to know each other, but the support, comradery and friendships we’ve made through the Arthritis Foundation are unbelievable,” says Jodi. “No matter what time of day, our AF friends are always there for us to lean on or to vent to. They just get it.”
Joe adds that they’ve met some of their best friends through Arthritis Foundation events, and that their relationships with these families have given them the confidence and strength they need to cope with Brenna’s illness. Above all, they have introduced him and his family to a powerful coping mechanism: fundraising.
The Drevlows host a winter fundraiser, “Holiday Lights in Tourist Park,” in which they decorate the local city park and charge visitors a small fee to drive through it. In November, the Drevlows, with the help of family and friends, transform the area into something truly spectacular for the community, and for each other. “On bad days, it gives our family something to look forward to,” says Joe. “I mean, what kid doesn’t love lights and 16 foot snowmen?”
As well as helping with the lights show, many of the Drevlow children use their talents to make a difference, says Jodi. Their oldest daughter, Brianna, uses her local celebrity as Miss Thief River Falls to raise awareness and recruit members for Brenna’s Brigade. Their son Brent, a classically trained pianist, plans on hosting a concert to raise money for the Arthritis Foundation before returning to college in the fall. Other children recruit friends and donations for Brenna’s Brigade through campaigning on social media, selling artwork and even going door to door for donations.
For Joe and Jodi, helping fund a cure is how their family takes control. “We know that no single dollar is going find a cure, but if we can make a down payment on that cure, we’re all for it,” says Joe.