Cerebral palsy: “We are born and we die with it, but we must organize ourselves to give the most to our children”
|Camille Marti-Fourré, ici avec son fils Aaron, veut faire changer le regard sur la paralysie cérébrale. – DR@MKL
Camille Marti-Fourré, a Montpellier resident living in Toulouse, mother of a little Aaron, is an ambassador for STEPtember, the month of awareness of cerebral palsy, at the initiative of the Cerebral Palsy Foundation, which aims to raise awareness and provide better care for this little-known disability that nevertheless affects four newborns every day.
Aaron was two and a half years old when doctors finally put a name to the multiple disabilities identified by his parents: he has cerebral palsy, the first motor disability in children, linked to brain damage occurring at birth. Camille Marti-Fourré, Aaron's mother, is the ambassador for STEPtember awareness month, launched at the initiative of the Cerebral Palsy Foundation. The Montpellier resident, who lives in Toulouse, also has a remarkable Instagram account about her daily life and that of her son, which will give rise to a book in March 2025.
It took you a long time to be able to put a word on Aaron's disabilities…
We found out that Aaron had cerebral palsy when he was two and a half years old. We felt, since Aaron was six months old, that there was “something”: Aaron didn't turn over when we put him in his bed, and there were a thousand other little signs, we felt that things weren't right. Our doctor wasn't at all alerted by the situation, we changed doctors, and our new doctor prescribed tests, blood, genetic, urine, which didn't show any problems.
However, she very quickly told us about the disability, and from then on, everything happened in quick succession, we were followed by a Camsp, an early medical-social action center, which diagnosed a “global developmental delay”. I had time to imagine anything and everything. The waiting times for MRIs are very long, and it was the MRI, carried out almost a year after being prescribed, which finally showed brain damage in the white matter, the myelin. And they didn't use the term cerebral palsy, they told me that my child had after-effects of periventricular leukomalacia, and that it couldn't be repaired. It was a doctor who was following Aaron in rehabilitation who put the word cerebral palsy.
Aaron is not a special case. Making sure to speed up care is one of the Foundation's main battles. The STEPtember event is focused on the “Together” project, which aims to screen before the age of six months.
We know that given brain plasticity, the earlier the problem is detected, the earlier children will benefit from the best tools to evolve.
But there is no cure or recovery.
No. You are born with cerebral palsy and you die with it, even if you give your children the best you can. You have to organize yourself so that it is possible. With appropriate rehabilitation, they can develop other strategies to overcome their disability.
Cerebral palsy affects 4 newborns per day. Midi Libre – SOPHIE WAUQUIER
You were able to understand why Aaron suffers from this handicap ?
Very prematurity is a risk factor for brain damage, this was not the case with Aaron, who arrived a little early, and was not monitored. But I had a very complicated pregnancy. The day I found out I was pregnant, my mother told me her cancer had recurred, she only had a few months to live. She died when I was six months pregnant. A week later I was in the hospital for a risk of childbirth, I stayed there for two months. Maybe that's when Aaron suffered. But I also know that I suffered from poor oxygenation of the placenta, placental malperfusion.
“The Paralympic Games opened up the field of possibilities”
Once the diagnosis is made, it's easier?
That's where hell begins. We don't know what cerebral palsy is. But around us, including in the medical world, a lot of people are as helpless as we are. The disability is misunderstood.
We are not given any explanation of what this can lead to, no projection. We are not directed anywhere. None of the professionals who surround Aaron, the occupational therapist, the psychomotor therapist, the physiotherapists, etc. are trained in this disability, they had to find out to try to be efficient. We, parents, become “professional” coordinators, we go on the internet, we search… I was incredibly lucky that the Instagram account opened before the diagnosis put me in touch with thousands of mothers. They are the ones who helped me. They advised me on rehabilitation courses, physiotherapy methods… But each child requires personalized support.
The foundation is launching an appeal for donations
The Cerebral Palsy Foundation was created in 2005 by parent associations and health professionals, with the support of the Ministry of Higher Education and Research. Objective: to promote and support research into cerebral palsy, and to work to improve the quality of care and support, based on a defined care pathway to be established. It has regularly conducted calls for research projects and funded projects. These calls for projects are funded through donations that the foundation collects. Since 2005, nearly 7 million euros have been invested in seventy-eight research projects.
The Cerebral Palsy France network also supports nearly 10,000 people (children, adolescents and adults) every day in 240 medical-social establishments and services, as well as in inclusive housing.
How is Aaron doing today??
With physiotherapy, occupational therapy, psychomotor therapy, speech therapy, the orthoptist, he started school this year, like all the other children, with an AESH. There too, it was an obstacle course, he had been refused at first.
Aaron started walking this summer thanks to intensive courses in Barcelona, with the Medek method. He speaks very well. He has a lot of vocabulary, but it's very stereotypical, he is part of the 8% of cerebral palsy patients who also have autism spectrum disorders. We adapt. Despite my child's disability, I wouldn't change my life for anything in the world. I know we're going to have a fabulous life. But we mustn't give up and never give up.
The Paralympic Games have just ended. Inclusion, a benevolent view of disability, are not just words?
The Paralympics couldn't have come at a better time. They opened up a field of possibilities, and I closely followed the performances of the T 38 category of champions with cerebral palsy.
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