In life, there are meetings that have a great impact on us, that move us deeply and that force us to realize just how lucky and blessed we are to be healthy.
It was on a mild fall morning in the Rosemount borough of Montreal that I had the privilege of meeting 12‑year‑old Charlotte, who suffers from cystic fibrosis, and her wonderful family. We gathered at her home to film a short video that would later be used to tell her story and, most of all, to convey her message of hope.
Charlotte sits at the piano and starts playing the first notes of the score to the movie Amélie. Everyone in the room is astounded by her undeniable talent and by the beauty of this sweet melody. It must be said that Charlotte takes after her father, singer-songwriter Frédéric Giroux, member of the group Mes aïeux. “Music helps me work through the bad stuff and deal with my emotions,” Charlotte says with self-assurance.
On April 12, 2005, when Charlotte was a year old, her parents were told that she had cystic fibrosis. Her mother, Chantal, cannot help but become emotional as she talks about the day when their lives were turned upside down and changed forever. When the doctor called, she already knew what he was going to say. All the warning signs pointed to it: abnormal weight loss, considerably underdeveloped growthand salty sweat. “The shock was brutal, and our universe collapsed. It was the fear of the unknown. We didn’t know what to expect. And, above all else, we immediately thought of the worst-case scenario, that our daughter was going to die,” Chantal explains.
Once they had absorbed the shock and spent countless hours learning about cystic fibrosis, the couple rolled up their sleeves to manage Charlotte’s disease. “We quickly learned to become home nurses,” Frédéric recalls. The tube feeding every night, the clapping, the medication and the numerous visits to the hospitals soon became part of the family’s daily routine. Given Charlotte’s considerably stunted growth, the challenge was even greater. However, months and years passed, and Charlotte changed from a frail little girl into a young teenager filled with life and dreams for the future.
“Had Charlotte’s disease been diagnosed at birth, we could’ve stabilized her condition and avoided all the damage caused by her retarded growth,” Frédéric points out. Incidentally, the couple reminds us that Quebec is the last province in Canada to not include cystic fibrosis in its neonatal screening program. Yet, an early diagnosis could limit the damage caused by the disease, damage that is sometimes irreversible. That’s why, throughout their involvement with Cystic Fibrosis Canada over the past several years, the Giroux family has chosen to make this issue their main cause.
Today, Charlotte is doing well and manages her disease admirably on a day-to-day basis. Her parents encourage her to become more and more independent and are always nearby to support her during more trying times. The most difficult part is dealing with anxiety when Charlotte is not doing as well. The disease inevitably impacts family life, as well as Charlotte’s younger sister, Juliette who is barely five years old. “Juliette notices that we pay a lot of attention to her older sister, especially when her condition deteriorates,” Chantal explains. “This sometimes makes her react. She’s even told us that she would like to have cystic fibrosis too!”
Chantal and Frédéric place a great deal of hope in research, which has led to great advances over the past 35 years in the search for new treatments. Some of these advances now make it possible to considerably improve Charlotte’s day-to-day quality of life, as well as that of many other patients who suffer from the disease.
In fact, this young girl, who dreams of becoming a professional photographer in order to travel the world, is full of life! In addition to excelling at the piano, she regularly plays basketball, dances and goes downhill skiing with her family. Chantal and Frédéric also have great dreams for their Charlotte, particularly that of seeing her become a mother one day (if she wants to!) and, who knows, maybe even a grandmother. “Research allows us to believe and to cherish the hope that we’ll be able to watch our daughter grow by our sides for as long as possible. Each time someone donates time or money to advance the cause, that person gives us a bit more hope,” Frédéric explains.
Towards the end of the day of filming, Frédéric, accompanied by Charlotte, sang us a song from his first solo album Le deuxième souffle [the second wind], which was released in April 2016. The song entitled “T’es belle à voir aller” [you’re amazing to see], written by Daniel Beaumont, describes Frédéric’s admiration for his daughter and the struggle that she is waging. Charlotte is indeed amazing to see. And so is this beautiful family that, united in the face of the disease, gives us hope that we will one day find a cure!