Marion Barq, suffering from spinal muscular atrophy and “mom like any other”

At 33, Marion is a school teacher, and wants to live her life as a mother, “like the others”. Suffering from spinal amyotrophy, she is the mother of a little girl, Romy, and she wishes to experience her parenthood, despite her illness and her handicap.

Marion Barq lives in Neuilly-Crimolois (Côte-d’Or), with her partner and her daughter Romy. She has infantile spinal muscular atrophy type 2 which appeared at 9 months.

Marion Barq describes her condition without shame, though she “I don’t like being in the light”.

MB: “I’ve never walked, I’ve always been in a wheelchair. At that time, the future was a bit dark, research was not advanced enough to allow us to have better prospects for the future than we have today.
So we told my parents that I won’t be spending two years in Dijon. Since my parents are quite combative, they decided to follow me to Paris to the Garches hospital. We met the wonderful Professor Barois and his team who, in fact, gave much more hope for my future, and therefore showed them that there were adults affected by this disease. My parents have this memory of being somewhat “saved” by this second diagnosis.”

In addition to being the mother of a little Romy, Marion takes on an important family role.

Marion Barq: “I’m also the mother-in-law of two boys my wife had from a previous marriage. I had a very happy childhood despite my handicap, I was always treated like any other child. J I was always pushed to work, to getting up in the morning, despite the difficulties, the pain, I think that’s what he does today, I have a bit of everyone’s life.

Sometimes normality can seem very trivial, even a little boring, but when you have a serious handicap like mine, normality, in fact, is really great! And for me, it allows me to lead my life in a very fulfilling, very happy way and this is kind of the message I will try to convey in the portrait that will be broadcast on the set of Téléthon on Saturday. Despite the somewhat gloomy announcements and the life difficulties imposed by the handicap, because we won’t lie to each other, it’s not all rosy every day, there are more difficult things, there are many hospitalizations, problems, lung diseases, risks.

But life can be so damn good, it’s definitely worth living anyway!”

Marion received important care, until adolescence. A heavy operation has allowed him to face the future with more serenity.

MB: “My disease causes a lot of muscle degeneration, almost all muscles are affected. And this leads to extremely low breathing capacity. I only have 30% of my breathing capacity. During childhood and adolescence, as I as we grow up, the spine twists, it causes considerable scoliosis. Little by little, if nothing is done, the spine touches the lungs, and there things get very complicated. When I was 14, I underwent back surgery, which allowed me to put my spine straight back a little and was locked, to stop this twisting which endangered my breathing.
From this very heavy operation, I’d say it’s a second life. Until the age of 14, daily life was marked by treatments, large daily physiotherapy sessions, verticalization. After the operation, I was able to release the treatments. I still care, but less important”.

Thanks to donations, thanks to scientific progress, research on genetic diseases is advancing. Diseases that a few decades ago left little hope for patients.

MB: “I started a therapeutic trial, before I got pregnant with Romy. It was one of the first advances: gene therapy. type I, without treatment, can kill relatively young children and nowadays there have been incredible advances in gene therapy, with the result of the work done by Genethon, which could really start saving lives.

Things have evolved well. For me that was 30 years ago, now there are very competent doctors in all big cities in France including Dijon. I am very happy in my current life but I think that if I had been born thirty years later, with the drugs that are now on the market, I would probably walk today. So I wouldn’t be like everyone else, but there are children who are much more affected than me, who manage to take a few steps, make some trips. These are children who, a few years ago, had a future truly threatened by the disease”.

Marion does not give up on possible cures. Her priority right now is above all her family, but when the time comes she will want to resume therapeutic trials.

MB: “I always have hope, it is my keyword that guides my daily life. For me, if there is life, there is always hope behind it. I think that ‘at my age, and with all the retractions (muscular ed), I have no hope of walking again, but I still have hope of stopping the disease. It’s a progressive disease, I hope to be able to breathe better, to be less in danger every autumn when diseases like the flu threaten us. I have hope and when I no longer have the project to build my family, I think I will go back to all these treatments, to try to get the best out of them”.

When Marion wanted to become a mother, the medical profession did not dissuade her, but she expressed reservations. Marion didn’t give up, and now her daughter at her side confirms her choice.

Marion Barq: “The disease weakens the muscles, affects the respiratory functions. It is a rather black picture that the great specialists do not dream of, despite all their benevolence, a pulmonologist cannot tell me to do it! My plan to be a mother, it was more than a project, it’s a struggle.

The desire to be a parent, for my wife and I, is stronger than all the warnings of the medical profession and the announced difficulties. I have never been so satisfied and serene as pregnant. There were, of course, possible complications, for which I had been warned. As soon as Romy snuggled into my tummy, I always had the feeling that we were forming a shock team before it was even born. She gave me the strength to face everything!

Romy’s birth is my biggest battle, it’s my biggest victory, it’s also a big revenge on the disease. It obviously resonates for me, but also for all my loved ones. It’s everyone’s win.”

Marion does not minimize the constraints associated with her illness. It is on a daily basis that you have to manage your physiotherapy sessions, protect yourself from any respiratory infections. A discipline that she has always managed.

MB: “I have daily treatments, I have physiotherapy sessions, I have a ventilator. On a day when I’m not sick, i.e. I don’t have a cold, nothing at all, I have one hour of treatment a day, plus annual multidisciplinary consultations related to my pathology, especially in pulmonology.

Last week I caught a big bronchitis, with an early left lung infection, I had 8 hours of treatment a day. I take care of myself as much as possible, I am very alert. I have a carer who comes every day, at certain times of the day. He assists me with all the chores that involve moving, showering, going to the toilet, that sort of thing, everything I can’t do, despite my desire to do it.”

Marion is a teacher in a school on the outskirts of Dijon. Her presence in her establishment has enabled her to acquire legitimacy in her work, with her colleagues, with the students’ children and parents, daily contacts from which she draws her energy.

MB: “I work in a primary school in Quétigny, I’ve been there for 10 years. I’m in charge of the bigger ones, CM1/CM2 and it’s going very, very well. Both with my colleagues and with the children and their families. I fido. I proved, as far as I could, like everyone else. I don’t feel treated differently. I’m never bored! There is a mental load which is important, because in addition to the work in the classroom there is also work collateral at home, no day is the same and that suits me very well”.

Marion is never short of ideas. Resilient, she has been through tough times but she is keen to share her enthusiasm for her.

Marion Barq: “I always have so many projects! With my husband Lionnel, we decided to create an artisanal and family chocolate factory. We wanted to work together, separately, in addition to each other’s jobs. Another ongoing project, a wedding, in July 2023 ! People say “that’s great, that’s admirable”, but in the end it’s everyone’s life! There is nothing specific except that they are on 4 wheels! We try to live things, experiences, like everyone else! Must StI say that even though there are hard hits, there are also a lot of good moments. You have to give yourself the means, you always have to fight a little harder to achieve your life goals, but it’s worth it.

Marion regularly publishes on social networks on the subject of disabled parenting, under the pseudonym Maman.à.roulettes.