2023-08-05 06:07:00
A few days ago, L’Art de rien took place, an inclusive festival at the Château de Vaux, in Loiret. On this occasion, four families were invited by the French foundation DUX to help and accompany myopathic children. All of them have a child who suffers from it. Among them was the Mouscronnoise Charlotte Barze, mother of Baptiste who blew out her 13 candles there. “It’s the DUX4 gene creating the muscle protein that is failing. Instead of being made, the protein disappears to be replaced by fat. It often starts in the upper body, the face, before descending into the arms, then it’s the whole body that takes… There is no age concerning the onset of this disease, but the more it occurs when you are young, the more you are affected by it…”, breathes Charlotte whose body of her Baptiste unfortunately follows the trajectory as she has detailed it.
The joy of children, the respite of parents
The DUX foundation knows to what extent the disease is disabling for the child, but is also restrictive for those around him. Inviting families was therefore allowing a respite for these dads, these mothers, these brothers, these sisters… I found the association in France. Nothing in Belgium except one or the other info from the Belgian Telethon. Going there was good for the children, but it also gave some respite to the parents. It was an opportunity to let go by leaving our children supervised by volunteers, but also by talking. I met beautiful people there: the leaders of the association, the ambassadors Chloé, Lena and Lise who were also touched and the parents, including a family from Tournai by the way.” An association in a festival is also an opportunity to gain visibility in order to raise funds for research. “They are done in Holland from what I know. For the moment, it is incurable. We do not know how the disease behaves, it is never the same from one person to another … We can just relieve with massages or a good bath for example. We had to fit out the bathroom with a handle and a seat for its showers.”
This break in the life of Charlotte, of Baptiste, but also of her little brother Andrea, 7 years old and in good health, is all the more precious since the illness implies that a wheelchair has been part of daily life since June. … “Baptiste played basketball for a long time, until last year, but his muscles are getting more and more tired by the small daily gestures, he no longer knows how to cut his meat for example. He still walks, he can make short trips around the house…”, continues Ms. Barze who testifies to make known the existence of the disease, but also of the foundation. So that parents who would ask themselves questions without finding answers in the face of the Belgian abyss do not know its disarray…
This January 8, 2021…
Although he was 13 years old, the diagnosis might only be made very recently: “We started asking ourselves questions when he was 2 and a half years old. He was followed in Tournai by two doctors who said that “he had nothing. For the facial paralysis, we were told to do surgery! Then, there was the weakness in the legs… It’s 2020, the year of the Covid, seeing it constantly at home, that we found that his shoulder blades were sticking out strongly, that his sternum was drawing in and that he was extremely thin. At the hospital in Mouscron, there, they felt that having two different neuromuscular problems was still worrying A pediatrician did some research and allowed us to get a first appointment in Brussels.Quickly following a first visit in September and October 2020, to a neurologist and a geneticist, it was not until January 8, 2021 that we knew what Baptiste was suffering from…”
Continuing education with a disability is not easy. There too, it’s an obstacle course, explains Charlotte, who however says she is supported in her own city: “The schools in Mouscron are not able to accommodate children in wheelchairs, but it’s rather general. The closest really adapted is in Chièvres, but I don’t want him to go and live in a boarding school. The solution came from Saint-Henri, in Mouscron, which is accommodating. Baptiste is going to go to secondary 2 there. The school authorizes him to use the elevator in the new building and to cross the big leagues while the metallurgy section is going to make a ramp for her to make it easier for her to move around the enclosure with her wheelchair that we have just obtained from the mutual insurance company. manual, but we will have to motorize it, he is too dependent on people. Later, Baptiste would like to do research on his illness and he would therefore like to study science.”
He wants to study science to research his own disease
Continuing education with a disability is not easy. There too, it’s an obstacle course, explains Charlotte who says she is supported in her own city: “The schools in Mouscron are not able to accommodate children in wheelchairs, but it’s rather general. The nearest really suitable one is in Chièvres, but I don’t want him to go and live in a boarding school. The solution came from Saint-Henri, in Mouscron, which is conciliatory. Baptiste is going to go there in 2nd secondary. The school authorizes him to use the elevator of the new building and to cross the playground while the metallurgy section will make him a ramp to facilitate his movements in the enclosure with his wheelchair which we have just obtained. of the mutual. It is manual, but we will have to motorize it, it is too dependent on people. Later, Baptiste would like to research his disease and he would therefore like to study science.”
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