#KidsCantWait: Laila’s Journey

The Start of Our Journey

Laila’s journey started when she was just six years old. She began complaining of leg pain, something that many parents might chalk up to growing pains. We thought, like most parents, that it was just a phase—something that would pass in time. But it didn’t. Her legs began to stiffen, and eventually, she could no longer walk. Her knees were so rigid that she could barely move, and the pain was unbearable. I’ll never forget the moment she looked at me, tears streaming down her face, and said, “I can’t walk, Mommy.” It was then that we knew something was really wrong.

We rushed to the doctor, and after months of tests, consultations, and doctors who couldn’t quite figure out what was happening, we finally got the diagnosis: Juvenile Idiopathic Arthritis (JIA). The weight of that word—the uncertainty of what it meant for our sweet girl—was overwhelming. But at the same time, it was a relief to finally know what was causing her pain. That relief, however, quickly faded when we realized what this meant for the future. She would face constant pain, flare-ups, and treatments that had to be adjusted as she grew. It was going to be a long road, and none of us were sure what that road would look like. The medications seemed scary and we didn’t know a lot about the side effects of Methotrexate and all that entailed.

A year after Laila’s diagnosis, Sarina began to complain of pain in her joints. Her knees, her wrists, her fingers—everything seemed to hurt. At first, we thought it might just be the stress of living with a sibling who had JIA. But as the pain lingered, we knew we had to get her checked out. The doctors ran tests, and after a lot of waiting and uncertainty, we finally got an answer—but it was different from Laila’s. Yesterday, Sarina was diagnosed with hypermobility, a condition where her joints were too loose, making them unstable and prone to pain. Unlike Laila, who faced stiff and inflamed joints caused by an autoimmune response, Sarina’s joints were overly flexible, which caused her discomfort and instability and a more physical response. It was a relief to know what was going on, but at the same time, it felt overwhelming. We were suddenly faced with a new set of challenges, and the solutions weren’t as clear-cut as we had hoped.

The Struggles with Diagnosis and Support

Navigating the diagnosis process for both of our girls was anything but easy. For Laila, it felt like we were chasing a diagnosis for months, seeing specialist after specialist, trying to figure out what was wrong. Sometimes, we didn’t even know the right questions to ask. We felt lost in the process—how could we advocate for her when we didn’t even fully understand what was going on? It was frustrating, exhausting, and confusing.

Sarina’s diagnosis, while different, was no less challenging. Hypermobile joints were something the doctors knew about, but treatment wasn’t as straightforward. There weren’t clear solutions for managing the pain, and it wasn’t just about giving her medicine—it was about educating her about her joints, adjusting her life, doing physiotherapy to strengthen her joints, managing her activities, and making sure she didn’t hurt herself by pushing her body too far. It felt like a constant balancing act, and at times, we didn’t know if we were doing enough.

To make matters more difficult, we lived in a rural community in the South-Eastern corner of British Columbia (BC), which meant travelling over 8 hours, each way, to get the specialized care Laila needed. Those long car rides were too painful and nearly impossible for Laila during a prolonged flare and flying was not financially sustainable for our family. At one point, when Laila couldn’t even walk and we had to carry her everywhere, we took her to the hospital in Calgary. At one point, when Laila couldn’t even walk and we had to carry her everywhere, we took her to the hospital in Calgary. After many hours of back and forth about whether we could be seen as a BC-based family, the ER doctor arranged an urgent consult with a pediatric rheumatologist. We spoke with the pediatric rheumatologist that night, and Laila was seen by them in clinic the next day. Thankfully, that rheumatologist advocated for us, and after many months of persistence and advocating for our daughter, we were able to arrange for Laila to get the care she requires much closer to home. We now understand that this all happened at a time when the flexibility of families having access to out- of-province care in pediatrics was becoming even more difficult due to provincial changes in health delivery. My heart goes out to any family in the same situation now who are unable to receive access to care they need in a way that best supports their child and family.

The Support of Cassie + Friends

In all, it took eight long months to get a diagnosis, but even after that, the ups and downs continue. Each day still feels like a new challenge.

One of the most significant turning points in our journey was when we found Cassie + Friends. We were struggling, feeling isolated, and unsure where to turn. But when we discovered Cassie + Friends, everything changed. Through their sessions, we found not just resources but a community of families who understood exactly what we were going through. We connected with parents who had been through similar struggles, and we learned so much from their stories. The tools and advice we received from these families were invaluable.

The Cassie + Friends injection kit was a game-changer for us. We were terrified of the thought of Laila and Sarina needing injections as part of their treatment, but having that kit gave us the guidance and confidence we needed to handle it. The instructions were clear, and knowing that other families had used the same kit made us feel less alone.

Attending Family Day was another pivotal experience. During this event, we learned so much about how to better manage Laila and Sarina’s conditions. We started following a Mediterranean diet, which helped to reduce inflammation, and we began tracking their activity levels and sleep to better manage their pain. Over time, we’ve come to understand that this journey is about constant learning and adapting. The more we know, the better equipped we are to support our daughters.

We also joined an important research project as parent advisors where we are working with other affected families across Canada to create a framework that shares how JIA affects patients and families. The project is called “Producing an Arthritis Value-Framework with Economic Evidence”, or PAVE. By sharing our experience in this project, we hope to give doctors, researchers, and policymakers a better understanding of how to help patients and families.

Advice to Other Families

If there’s one piece of advice we’d give to other families facing a similar diagnosis, it’s this: Reach out to the community at Cassie + Friends. The organization is a warm, welcoming space filled with people who understand exactly what you’re going through. It’s easy to feel alone when your child is struggling with a chronic condition, but Cassie + Friends showed us that we didn’t have to face this journey alone. The connections we made through Cassie + Friends have been life-saving for us. Not only have we learned so much from the resources they provide, but we’ve also felt supported and uplifted by families who are walking the same path.

Advocating for your child’s needs can be overwhelming at times, especially when you’re navigating a condition that’s not widely understood. But don’t be afraid to ask questions, seek out help, and lean on others who are in the same boat. The road may not always be smooth, but with the right support, it becomes a little easier to travel.

Our girls’ journey continues, and while there are still challenges, we are learning to embrace the uncertainty with hope. The support from Cassie + Friends, our growing understanding of the conditions, and the love we share as a family give us the strength to face whatever comes next.