“Last Christmas, my husband and I were looking to leave Canada because we feared for my life. Yes, the country so many people immigrant to as a safe haven was threatening my life. I love my country but as a patient with a rare disease called Cystic Fibrosis (CF), Canada has failed me. Staying here without access to innovative, breakthrough medicine would have eventually ended my life.
CF is the most common fatal genetic disease affecting Canadian children and young adults. I have suffered from persistent lung infections, pneumonia, a lung collapse, and lung bleeds that have scarred my lungs and slowly taken away my ability to breathe. Even while developing in my mother’s womb, CF caused irreversible damage to my digestive system. This damage caused difficulty digesting fats and proteins, malnutrition, and constant painful bowel obstructions. I was so dangerously skinny during my teenage years, I was connected to a feeding tube at night so I could eat around the clock. I desperately clung on to hope one day, the researchers would discover medicine that could target my genetic flaw and save my life. Every birthday candle, every shooting star, my wish was always the same for 36 years: that a breakthrough medication would be discovered that would change my life.
At the end of 2019, the CF world cried happy tears together. A new medicine called Trikafta was approved in the US and was reversing the devastation caused by CF. This breakthrough medicine sounded right out of a sci-fi movie. It corrects the way the faulty genes of CF are expressed which causes this devastating disease.
The results were miraculous. Patients were coming off of supplemental oxygen, going home from the hospital, and gaining their LIVES back. For once, we were winning back control from a disease that relentlessly terrorized our lives. For the first time in my life, I saw HOPE for my future. It was a medical breakthrough that had scientists around the world celebrating right alongside the doctors and patients. My dreams had come true… or so I thought.
My world came to a crashing halt when I found out the miracle medicine I have been praying for my entire life simply wasn’t available in Canada. At best, it could take 5 or more years before this drug became available. In my heart, I knew surviving that long without intervention was unlikely. I was already being assessed for a double lung transplant. I was terrified. At one point, a doctor recommended I start looking into children’s books about lung transplants so I could prepare my son for my next step. I was furious. I wasn’t ready for that to be my journey yet. I didn’t want to prepare my son for that… yet. I wanted to shelter him a little longer from the gravity of my declining health. All of my ‘mama bear instincts’ told me to find another way – to fight for my life.
I was in disbelief my country would let me down. After all, Canada has the highest life expectancy for CF patients in the entire world. We were the country that first identified the defective CF gene. We initiated this breakthrough research. Canada is supposed to be synonymous with healthcare. I have always believed I was in good hands. I felt abandoned, left behind, and forgotten by my country. It left me shattered. I’ve always been a proud Canadian and it is an integral part of my identity. If I’ve lost that faith, who am I? This country no longer felt like home.
My husband and I began to have conversations with other Canadians that had immigrated to another country to access this medicine. We were actively making a plan to move but I didn’t want to uproot our lives. I clung on to hope my life would be saved, right here in Canada. I love my community. I want to raise my son here, but more importantly, I want to LIVE. I decided to fight back. I took a series of tests at my hospital and I applied for Compassionate Care with the drug manufacture. I asked them to have mercy on my life and give me the medication for free until my country can figure out how to obtain this medicine. I was running out of time and I needed this medicine now.
Immediately after submitting my application, I jumped in my car and made a video for social media. I needed to tell anyone who would listen what my dream for survival was and how they could help. I had this urge to rally the troops and to ask them to raise my voice. I had this vision of a giant megaphone. I needed the whole world to know there is a medicine that could save my life – just across the border. From that moment forward, I was on a mission. I contacted every news station that would listen. I wrote the papers, I poured my heart out on social media. I asked the world to share my message. I gathered signatures for petitions, spoke with advocates across the country, and did video after video, interview after interview. I sent registered mail to the executives at the pharmaceutical company. I printed out family photos, pleading with them to save my life. I sent each one of them eight family photos. I included letters from me, my husband, and even my 4-year-old. He wrote the words ‘Trikafta’ on a Santa wish list over and over again. The word TRIKAFTA was said countless times a day in our home.
Every hour of every day, I fought. I fought attached to an IV pole while each week my lung function plummeted. I fought until I required full-time oxygen. I fought until I needed help simply getting bathed. I was slipping away. I could see it in the eyes of everyone I loved. My support system was terrified and so was I. I continued to share my message. If I was losing my battle, I wanted my son and husband to know I did everything possible to be with them.
On January 8th, 2020, my world changed. At a weekly hospital appointment, I found out my lung function had decreased to 28%. I was devastated. Those numbers reflected my biggest fear – I was at the end of the road with my lungs. None of the IV medications were strong enough to fight the pneumonia that had taken over my lungs. I was angry, shocked, and struggling to process what my next steps might be. Never in my wildest dreams would I have guessed what happened next.
The clinic pharmacist came into my clinic room and said, ‘Stephanie, we’ve seen the incredible work you’ve been doing and it looks like it’s paid off. The manufacture has approved your application. You are the first in Canada to get approved for the compassionate care program! You will be receiving the medication for free, for life.’ I was shocked. I wrapped my arms around that pharmacist and gave him the biggest bear hug. My friend who came to support me for this appointment cried tears of joy with me. As we hugged, my friend said, ‘I feel like we won the lottery!’ I replied, ‘We did! We won the LIFE lottery!’
It took a couple of weeks for the medicine to arrive in Canada and my health continued to decline. My family room was transformed into a hospital room with nurse visits, supplemental oxygen, and around the clock IV antibiotic treatments. My mom had flown in from Florida to help take care of me so my husband could work. Finally, my medicine arrived.
A national news station captured the moment as I took my first dose. They witnessed my weak, shaking hands hold two little pills as I cried tears of relief. My heart was pounding. I had painted this picture in my mind thousands of times. I had envisioned this moment JUST as it happened down to every fine detail. The stockings were still hung on the mantel. The tree was still up. My husband walked over with a mason jar glass filled with ice-cold water. As he placed the two life-changing pills in my hand, I asked him if he was ready for our life to change. Then I asked my 4-year-old, ‘Are YOU ready?” He nodded. I asked him if he knew what the pills were and he replied, ‘A miracle, Mama.’ I couldn’t have asked for a better response.
I swallowed the two little pills and hugged my son tight. We laughed while crying the most joyful tears. My husband wrapped his arms around us and we all cried together. The heaviness I held in my chest while fighting for my life suddenly lifted. My dreams had come true. My life expectancy was no longer pre-determined and I was given a second chance. I will remember that moment forever.
Within hours of taking my first dose, my body began to transform. My energy began to return and I started to be able to walk without the assistance of oxygen. My body rejected years of lung infections and my digestive system started transforming. The results were fascinating and brought me to tears daily.
Within 7 days, I gained back 7% lung function. That may not seem like a lot to others but that was years of lost function. That small gain brought me out of the ‘danger zone’ of lung failure. I gained my independence back. I was able to confidently bathe myself and even begin driving. I regained my sense of smell and food tasted better than ever. I could lift up my little boy and hug him. I was no longer in pain and no longer struggled to breathe. The simplest tasks were no longer overwhelming. As I was folding my son’s laundry that week, tears starting pouring down my face as I breathed in the smell of calming lavender. I had regained my sense of smell as my sinuses began to heal. Food tasted better than it had it years! Every day was an adventure in healing and my gratitude was now the only thing that overwhelmed me each day.
When the news segment of me taking my first dose of Trikafta aired, I had hundreds of families reaching out to me on social media. They all asked, ‘What is this miracle medicine?’ and ‘Why can’t my child get this medicine?’ Some families were congratulating me, others were simply angry. Even though the messages were heartbreaking to read, I wanted to get back to each and every one of them. CF families were hurting and needed answers. I messaged, phoned and video conferenced with many families in the CF community. I let them know the only reason why I received this medication was I was at end-stage disease and would have passed away without it. Unfortunately, you can only apply for compassionate care if your health is in this state. Many families didn’t understand the miracle medicine simply wasn’t available in our country.
The work was taking a physical and mental toll on my body. The weight of this unjust situation was heavy on my heart. Every time I would take Trikafta, I would think of all of the Canadians waiting for access.
One evening while talking to a couple of friends with CF, I opened up about my struggle to get back all of the families that needed answers. I broke down in tears and cried about how helpless I felt hearing stories of pain and suffering from families across the country. I wanted to answer every message but I was limited in my capacity. My friends listened and offered to help. We made a group email address and asked everyone to direct their questions to one source and we would take turns answering the family’s questions. From that point on, three friends with CF, on IV poles, began to educate families across Canada. We named our group ‘CF Get Loud.’ We wanted to make a difference in a country where so many CF families needed answers.
Today, CF Get Loud is Canada’s largest CF grassroots movement. We have over 4,300 advocates virtually marching together in stride, all towards the same goal. We educate families on access issues here in Canada and elevate the voices of CF advocates. We hope to empower all CF supporters to use their voice to make a change in this country. After 10 months of hard work, Canadian CF families got a big WIN. The manufacture announced their intent to submitted Trikafta to Health Canada. Families across Canada celebrated with tears of relief. This was the first critical step in bringing this medicine into the hands of struggling patients but we have a long road ahead of us.
My new life’s goal is to use my energy to ensure ALL Canadians with CF have access to medication. We need to fight for the approval of Trikafta and then for funding for CF patients across the country. One day I hope this battle is behind us and we can breathe easily. After all, breathing is a right. CF Get Loud will continue to fight for future medication and make sure no patient is left behind. The team has become a family and I wouldn’t want to do this volunteer work with anyone else.
2020 has been a year to remember in the best way possible for my little family. We are holding each other a little tighter than years before. We’ve discovered how precious this short life truly is and how quickly everything can change. I’m still here and still chasing my dreams. I am the mother and wife I always wanted to be and I’m breathing deeply and laughing without reserve. As we’ve overcome this incredibly hard season in life, I’m so grateful for this year – the year we won the life lottery.”
This story was submitted to Love What Matters by Stephanie Stavros. You can follow their journey on Instagram and CF Get Loud. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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