Every six months since birth, Jelly has been consulted at the Mucovisidos Resource and Skills Center at Rennes University Hospital. Sometimes hard days when the balance sheet is not good. But today, Jelly and her mother are smiling. In December, he was offered a brand new treatment with incredible results.
On the screen of the effective exploration test instrument, the nurse shows the candles that must be extinguished, a bowling ball that must be sent into the pin with one’s breath. Jelly concentrates and one by one, she makes the small flames disappear and all the pins break.
His smile says a lot about fame. “Before, He explains, Sometimes I needed to take a deep breath and I couldn’t, it was really unpleasant, I was out of breath“
Jelly suffers from cystic fibrosis. Since birth, she has struggled every day to clear the dense mucus stuck in her lungs.
And then, a year ago, the cafeteria was approved in France. The drug is manufactured in the United States.It is made up of three molecules that act on a protein that is deficient in the disease and which manages to partially recover itEric Danuville, a pediatrician at the Center for Resources and Skills Mucovisidos, described. This is only partial but it is enough to improve the condition of the patients and this is the case with Zélie. Kaftrio also allowed him to gain weight, breathe better, and have fewer infections. “
From day one, swallowing the first two capsules, it is gone.
Jelly shakes her head in her consulting room decorated with Japanese landscapes. The first hour was amazing. I didn’t expect it at all, the mucus was coming off, I was coughing, I was coughing, I had a lot of saliva, he explained with recollection, with the disease, the mucus is stuck in the lungs and hard to bring. Get him out, and there, with this drug, he comes. I was surprised that from day one, swallowing the first two capsules, it was gone. “
Jelly is 11 years old since March. Treatment is currently reserved for children over the age of 12, but he has received a waiver.
“That was huge news. He remembers his mother, Blandin Goutrin. It was both a lot of joy, an immense relief, we told ourselves that we might be able to keep the mucosa in the background, and then, at the same time, there was fear. We spent ten years with this disease so terribly that we were a little scared of the happiness that medicine can bring. We were afraid of being disappointed. So we said to ourselves that we were only going to take the good stuff, and they arrived. “
After a few months, Jelly’s respiratory capacity increased, making her shortness of breath less.
“It’s absolutely amazingDr. Daneville admits. The first time we gave this medicine to a child and we saw a diagnostic test, the sweat test turned out to be negative, as if he no longer had the disease, we told ourselves, it was awesome. For Jelly, the test is intermediate, proving that it works; “
Currently, Kaftrio is offered to children over 12 years of age, to 6-year-olds for certain young patients. In the long run, however, the drug may be given as soon as the pathology is diagnosed.
This is because the drug does not remove the marks left on the body by the disease before starting treatment. Jelly’s lungs are damaged so she must continue respiratory physiotherapy exercises.
On a whiteboard in her office, Sophie Jacques draws lungs. “You seeHe describes,In some places, your bronchial tubes have become deformed. With treatment, the mucus becomes more mobile, so it can be picked up in places that were previously inaccessible. “
Zélie sketches a mix of smiles and grimes. He realized that behind the good news was the promise of new practice.
Sophie immediately grabbed a water bottle so she could hold a little water and put in a pipe. “You breathe in and you exhale, gently and as long as possible, She asks Jelly, Yeah Al that sounds pretty crap to me, Looks like BT aint for me either.
“We know if we can get better we’re not just going to get better.“Sophie confesses to Jacques, confesses her passion.”This treatment, I will cry every day, it’s just wonderful. The lives of patients have changed. When they come into the office, I can see them clearly, alive, especially since the sword of this Democrat above their heads has disappeared, I want to cry. If we can turn this disease into a chronic disease and not a deadly chronic disease … “
In the next room, Simon Trubert is also preparing his torture device. Weights, balls, dumbbells. Every day, Jelly has to exercise. “It empowers them to live their daily lives better. ” Simon insists.
So the physiotherapist created a training program for jelly. “
Initially, he worked with a weight of one kilo and it was toughShe remembers. Now he has six! And with this new treatment, he is gaining strength, very bad for him, he has to work harder. “ She tells him with a smile.
The music begins, and Zélie stops.
“This treatment pays off in the Virades de l’espoir and all the efforts that the association makes to raise funds with all these actions. It is often said that small streams make big rivers, there, we see it, research is going on. But such patients There are those for whom this drug is not effective, so we must continue to fightBlandine Gautrin finished.
Jelly, smiling, picking up dumbbells. Advances in medicine, he lives it with eachAnd his inspiration!