May 3, 2021 at 10:05 am #16580Jenny LivingstonKeymaster
Throughout the month of May, which is CF Awareness month, CF News Today will be featuring a from story within the community each day. We’ll be sharing those stories here on the forum (although since we’ll be sharing on weekdays only, the posts will spill over into June) and they can also be found on Cystic Fibrosis News Today – Home – Cystic Fibrosis News Today and Instagram.
Day 1 of 31 Days of CF
Topic: My Metamorphosis as a CF Mom
This is @beth.vanstone’s story: Our story starts with my daughter Madi being diagnosed with cystic fibrosis (CF) at 8 months old. Finding a diagnosis was tough, but not nearly as difficult as learning and understanding the diagnosis. That was when I chose to become a partner with Madi in her journey and not just allow this disease to take charge. Now, of course, every patient’s situation is different, yet I believe there is always an opportunity to grab the wheel.
We were doing our best to steer this disease alongside an amazing CF clinic team at Sick Kids Hospital when Madi’s health quickly spiraled downward when she was only 10 years old. It was scary. However, there was hope: CF modulator Kalydeco! Sadly, it wasn’t covered by our provincial health authority at that time in Canada, where we live.
We were not prepared to let go of the wheel now. Madi and I jumped into uncharted waters and decided to make sure Kalydeco WOULD be funded for patients in Ontario. It took many trips to the provincial parliament. Our battle was difficult and highly publicized but eventually, we won.
Together, we have continued to advocate on behalf of CF patients. In September 2019, we took our journey to China. We spent a year training and raising $32,000 for CF Canada. Five full days trekking the Great Wall was an experience that was both empowering and a testament to the drug we had fought so hard to get.
Madi and I have partnered on this journey with my role being a mashup of mom, caregiver, advocate, and supporter. Madi has recently transferred from a pediatric clinic to an adult one, and I am not sure who had more difficulty with the transition (pretty sure it was me).
We are continuing to negotiate my place in this journey, as I begrudgingly turn the wheel over to Madi. Years of open and frank discussions, mutual respect, and tons of love have brought us this far. I look forward to many more years of my ever-changing role as a CF mom.
May 4, 2021 at 4:56 am #16586Paul met DebbieParticipant
Beautiful story! My parents also were very much involved in taking care and charge when needed, and they never took No for an answer if they thought things could be managed better health-wise. From them I learned to be persistent and not to follow guidelines blindly, but always find out what was the best solution for my situation specifically. Many times I had to adapt or deviate from official protocol and it always turned out for the best.
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