The Courage to Keep Going

Six-year-old Kiana was diagnosed with juvenile idiopathic arthritis (JIA) at age 3. Three years later, her parents and doctors are still searching for a successful treatment to manage Kiana’s pain and constant flares. Unfortunately, there’s no cure yet for arthritis.
 
Here, Kiana’s mom, Sheena, shares firsthand a recent snapshot of their journey. 

Two years ago, we made the difficult decision to add weekly methotrexate injections to Kiana’s treatment plan for her juvenile idiopathic arthritis (JIA). At the time, we couldn’t have imagined how many injections would come after that day, but here we are: 104 injections so far, more or less (she misses them when she’s sick). And as if that wasn’t enough, this past spring we added another powerful injection — a biosimilar to Humira, which now has added to that number.
 
This brave warrior has become all too familiar with weekly injections; yet each time, it’s still a struggle. While it has become a little easier, it’s still something that weighs heavily on Kiana. She faces these challenges with such strength, but that doesn't mean it’s not tough. Every week she digs deep and finds the courage to keep going.

In September, after numerous discussions with her rheumatologist, we were told it was time to change one of her liquid medications in hopes of reducing the number of flares she’s having. Fast forward to today: After six weeks and six days of navigating a maze of phone calls and delays, we are finally, finally, getting the prescription from a specialized pharmacy (not covered by insurance). I wish I could say this was an unusual or isolated situation, but sadly this is the frustrating reality of living with chronic illness and the complex world of insurance and health care access.

Meet the Family
 
This glimpse into our lives is just the tip of the iceberg when it comes to what it means to raise a chronically ill child. With the changing seasons, just like last year, Kiana has been battling more flares and extreme fatigue. The medications she’s on make her immunocompromised, so we have to be extra cautious with anything that could make her sick.
 
Most recently, some of her routine lab results have led to us checking her blood sugar levels multiple times a day. It’s another layer to the already overwhelming challenges she faces. It’s also a reminder that autoimmune diseases rarely come alone. Kiana doesn’t just have JIA — she also has asthma, making her immune system even more complicated to manage.
 
Sadly, we are not alone in this. Hundreds of thousands of other kids in the U.S. face similar struggles with autoimmune diseases. And like Kiana, they show immense courage every single day. Our fight isn’t just about managing her diseases. We are determined to continue pushing forward and advocating for change, to help others who are walking this difficult path, young and old.
 
Thank you from the bottom of our hearts for helping us continue this journey. Whether you donate to the Arthritis Foundation, share words of encouragement or simply keep kids like Kiana in your thoughts, you’re making a difference. Your support means more than you know.