Living Life Beyond
Your Condition: Madi & Beth, Cystic Fibrosis Changemakers

Managing a Complex Routine

CF care involves more than just medication. There’s physio, meal planning, and other daily tasks. How do you balance this complex routine, and what has helped streamline some of these responsibilities?

—Madi and Beth

A routine was key for us. Having a structured plan for each day kept things comfortable and habitual. We did our best not to stray from the routine, as each task related to Madi’s care was crucial to keeping her healthy. This consistency made it easier for Madi as a child to understand what each day would entail. It was also an important way for us to stay organized and avoid missing essential parts of her care, like physiotherapy, special meal prep, and medications.

Supporting Independence

Madi, as you grew older, how did you and your family approach finding a balance between giving you independence and keeping up with the demands of CF care? Were there moments when you felt you were ‘nagged’ but understood the care was important?

—Madi

As I got older, there was definitely some tension; I often felt like I was being nagged, but I always knew it came from a place of love. It took time for us to create a new “dynamic” where my mom learned to trust me, and I learned to take responsibility for my health. This was definitely a learning curve, and we both had to help each other and be understanding. Over time, we’ve found a balance that works. We’ve both learned a lot about how to handle things better by being patient with each other.

Family as a Team

Beth, as a parent, how do you and Madi navigate these responsibilities together? Has there been a turning point when you felt more like a team in managing her health rather than just “parent and patient”?

—Beth

We are always trying to find the right balance. Having been responsible for Madi’s care for so many years, it’s sometimes hard not to be over-involved. But Madi has become very proficient at managing the many challenges of living with CF. I can happily say that she’s learned to be proactive when she feels she is getting sick. She increases her therapy and makes an appointment to get into the clinic before it gets serious. She attends her appointments on her own and will text me for my opinion on suggested treatments when she’s unwell. I think this will continue to evolve as her life circumstances change. Still, I will always be here to discuss her concerns and support her.

Finding Peace of Mind

With everything you both have on your plates, how do you handle the worry that comes with managing CF? Are there specific tools or habits that give you peace of mind?

—Madi and Beth

CF is a complex disease that keeps you on your toes. You need to stay nimble, as life can change in an instant; a simple cold can land you in the hospital for weeks. Learning how to handle stress and anxiety has been crucial for us. We lean on each other during difficult times and cherish each other in the good times. We spend time doing what we love, like being outdoors and spending time with our animals. Focusing on the good in life is how we avoid letting the weight of CF take over our minds. We have learned to make peace with our situation by emphasizing the positive things that give life meaning.

Avoiding Conflicts Over Care

Madi, are there any strategies you and your mom have developed to reduce conflicts over care routines, like reminders for medications? What’s been most helpful in keeping things collaborative?

—Madi

For starters, having my KEEP device has helped a lot. It’s peace of mind for my mom, knowing I have reminders from another source. She still checks in, but as I’ve gotten older, I’ve learned to be more understanding when she asks about my medications and therapies. Taking a breath before getting defensive has really helped, as has understanding where she’s coming from. It’s also been important for her to learn to trust me. We’ve both grown a lot in learning to work together and support each other in a way that feels positive and respectful.

Family Challenges

Looking back on your CF journey, what has been the most unexpected challenge you’ve faced as a family, and how did you overcome it together?

—Beth

The biggest challenge came when Madi’s health was failing. She was very sick, and despite hospital stays, changing medications, and adding more therapy, she wasn’t improving. She was missing school, too sick to see her friends, and we were facing a lot of uncertainty about her future. Madi joined a drug trial that changed her life; the new therapy corrected the defective gene that causes CF. It was a miracle, but we quickly realized that the cost of this drug made it out of reach without insurance coverage. Together, we dove into advocacy, meeting with members of parliament, going to Queens Park, and doing news interviews to share the challenges of accessing life-saving treatments. After two years of this work, the drug became accessible for all CF patients across Canada. We still feel that this was the right thing not just for us but for everyone in the CF community, and we continue to advocate for patients with rare diseases.

Empowering Other Families

For families just starting out on this journey, what advice would you give them for building routines that respect both independence and the demands of CF care?

—Beth

Taking medications and doing therapy often feels like a punishment for both the caregiver and the patient. Changing that narrative is so important—do what you can to make it feel special. Our time together in the morning and evening doing Madi’s physio was special to us. We’d read books, watch a favorite show, or do something relaxing to take away the monotony of the routine. By making treatments just part of our daily rhythm, it didn’t feel like a big deal. As Madi got older and more independent, explaining why we did the routines helped her take pride in being responsible for her health. The transition of responsibility was gradual, age-appropriate, and closely monitored.

Transitioning to Adult Care

Madi, as you moved from pediatric to adult care, what was that transition like for both of you? How did you balance managing your health on your own with the support you needed? And Beth, how did you navigate giving Madi that independence while trusting she was ready?

—Madi and Beth

Madi: It was a really difficult transition. So much was changing at once, and it felt overwhelming. Looking back, I’m grateful I had a family that cared enough to “nag” and be involved. It was a gradual process of handing over responsibility, and we’re still learning. Over time, I’ve come to see what happens if I don’t take care of myself. I’ve seen the consequences for friends with CF who didn’t follow their treatments, and some are no longer here. It’s real, and it gets scarier as you get older.

Beth: As a mom, letting go of being so involved was hard. But seeing Madi learn to handle things herself—knowing when to increase therapy, when to call the doctor—gives me confidence. I’m always here to help if she needs it, but I’ve learned to step back and trust her to take the lead.

Managing Medication Through Life

Were there particular times when medication management felt especially challenging, like during summer months, weekends, or holidays? How did you, as a family, work together to keep on track during these tougher times?

—Beth

We were consistent with our routines to make sure therapy and medications were as habitual as eating meals. For holidays, like Christmas, we wouldn’t change our routine; instead, we’d fit treatments into the day by bringing stockings upstairs to open during Madi’s treatments. Travel was the same—we always brought her nebulizer and completed treatments before starting the day. A strong routine helped us keep everything manageable, no matter what was going on around us.

Hopes for the Future

As you both look ahead, what changes would you love to see in CF care or support for families like yours?

—Madi and Beth

We hope to see a healthcare system that supports all rare diseases, one that includes better access to specialized care, early disease detection, and life-saving treatments for patients. The CF community is fortunate in many ways, with access to world-class clinics and newborn screenings. But accessing therapies remains a challenge, and patients are still passing away due to policies that don’t recognize the unique needs of rare diseases. Madi and I are committed to continuing our advocacy to improve the conditions for all patients and families facing similar challenges.