Testimonial: The greatest gift that life can offer

Let's start at the beginning.

Hi, my name is Karine Dupuis, I have
23 years old. I am the happy mother of a 2 year old girl, Lily-Rose and I live with cystic fibrosis. Having been diagnosed at 2 months, cystic fibrosis has always been a part of my life. In fact, it has always been a huge part of my life: first with eating disorders during my youth and then with lung problems as a teenager. I am writing to you today because I firmly believe that there will never be enough hope and that my story can bring you a lot of hope. Mon
hope to me? She is my daughter.

I knew I was pregnant when I was 20. I was studying at the time and was still living with my parents. I must admit that it was quite a shock. After announcing my pregnancy, I had THIS first
appointment with pneumologists... THAT dreaded appointment... Dreaded, because I knew what they would tell me. To put you in context, at that time my lungs were only at 52% of their maximum capacity. My condition had been deteriorating for over 3 years. Intravenous antibiotics at least once every three months, embolizations because my lungs were bleeding and so on. So I knew that the doctors would never agree to my pregnancy.

Once sitting in the office with them, I start by saying, “Give me your opinion if you want, but honestly, it won't change my decision.” The doctors tell me exactly what I thought: that my pregnancy was too risky, that my lungs would suffer enormously and that it was, by far, a very bad idea.

You know, in the life of a healthy woman, pregnancy is synonymous with immense happiness. How many times do they hear the words: “Congratulations! “Wow! “Well done! ”. As for me, I was entitled to “Ah! What are you going to do? “You should have an abortion” and even to: “Your baby will grow up without his mom, it's selfish.” You can't even imagine the pain these words cause. Horrible pain. I felt judged everywhere I went. People who knew me looked down when our eyes met. My pregnancy was the worst ordeal of my life, but it was the greatest wonder of my life. The start of my pregnancy was very emotional and challenging. I was certain that I could never have as much pain as I did then. I was young, lost and sick, but most of all, pregnant. I made the decision to keep this child at the risk of my life. Because what was my life worth at that moment? I had in mind that I was going to die, that in 3 years, I had lost 60% of my lung capacity and that if I had to experience the happiness of being a mom, it was now or never. So I announced to the doctors that I would go all the way to the end of this adventure.

I lived one day at a time, one minute at a time. What can we do differently with all this change? I had appointments almost every day: either for diabetes, my lungs, the baby, genetics, neonatal care given the risk of the baby being born prematurely because of my condition.

I had to stop school. It was too demanding to do it all at once. I only lived for this little being who grew up warm in my belly. I was talking to this baby all the time. How many times have I said to my baby in my womb, “I know you and I made the right decision.” Nobody believed that we would get there, but I was convinced.

The pregnancy was... let's be honest... horrible. I ruptured my membranes at 23 weeks pregnant, I had a lung infection on top of an infection. My lungs only worked 36% and I needed oxygen. I lost 20 pounds while pregnant. Of course nothing was going the way we wanted it to be.

On December 6, 2015, at 36 weeks pregnant, a little wonder weighing 5 pounds 10 came into the world. Although a bit small, Lily-Rose was in perfect health and we left the hospital 48 hours after delivery. A perfect baby, who, already leaving the hospital, went through 12-hour nights without waking up. I was hovering over perfect happiness. I was completely satisfied. Until one day, on January 4, 2016, Lily-Rose, then less than a month old, started to have a fever. The verdict is in: meningitis. My so small baby even sicker than me...

The doctors tell me that the antibiotics taken during my pregnancy would have weakened her immune system and that my baby was seriously ill as a result. Lily-Rose spent several days in the hospital, but she came out like a champion! Until the day when... the first convulsions happen. Panic! She is then 9 months old. Meningitis would have affected his small brain and seizures would be a consequence.

You learn to live with it. Difficult, very difficult. But we live one day at a time. At that moment, I remember saying to myself: why us again? Why does the disease still affect us? The crises were quickly controlled and it is now a thing of the past. Do you have to
Ask: “Where is the hope in this heap of bad news? ” I'm getting there.

Two years after giving birth, I have just finished my studies, I am now working full time in addition to being a single parent. Lily-Rose is a curious, adorable little girl who loves life.

And the most beautiful thing in all of this? My health has never been better in 6 years. My lungs are now functioning at 73% of their capacity and are constantly increasing. I manage to get through my weeks, go to the gym and eat well. I am succeeding in living. Lily-Rose and I have and will always have a special bond! After all, she is the only one who knows how complicated living in my sick body can be sometimes! Eight long months of fighting, together, she and me. Our hearts beating in unison so that today I can hear from her mouth the most beautiful words on the planet: “I love you mom.” There it is, my positive! Because, despite all the pain, the rage, the fear and the anger, if I had to do it again, I would do it again without even hesitating a second! Cystic fibrosis is a fearsome, strong and tough enemy. She does everything to make you remember that she is there. I decided to do everything I could to show her that, even if she is there, she will never stop me from doing anything. I will do everything more slowly, at my own pace, but I will always get the same result as a healthy person.

My motto since winning my pregnancy: never let someone tell you that you can't do something.

Thanks for reading! I hope that my little piece of life has given you some hope!

Karine Dupuis

Quebec (Quebec) Canada

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