CHARLIE LIKE MARWA. THE PARENTS: “WE LIVED THE SAME NIGHTMARE”

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  • Italiano
Marwa Bouchenafa

Marwa is a small girl, twenty months old. She lies on a cot and she is showered by the help of the health staff and of her parents. She is alive and is loved. Just like Charlie Gard. And just like the little English boy, whose story is today under the spotlight, also Marwa was close to a death deemed unacceptable by a multitude of people.

The small baby girl (who has a twin sister) is hospitalized at the hospital of the Tiller of Marseilles since last September, due to a fulminant virus that caused her serious brain damage. Believing she was impossible to cure, in November doctors have decided to suspend the therapeutic treatment and to unplug the machines that were keeping her alive.

A hypothesis that was immediately rejected by the parents of the child who brought the matter before the courts. It was followed by a passionate debate, in France and abroad. The discussion focused more in general on the Leonetti Law on end of life, which for minors does not provide “under no circumstances” parental consent. Despite this, the Administrative Court ruled that suspending the care to Marwa was premature. Even the State Council had the same position.

There are several similarities between this story and the one of Charlie Gard, whose epilogue is to be decided. Similar is also the big mobilization of solidarity. Marwa’s parents have collected nearly three hundred thousand signatures to ask to keep their daughter alive. A group of people also created an association, Jamais sans Marwa (never without Marwa), that on Facebook constantly updates on the story of the baby. In Terris interviewed Justine, a member of the association, who is in daily contact with the girl’s father, Mohamed Bouchenafa, and with whom she has agreed to the answers given below.

How did you arrive at this happy ending for Marwa?
The Administrative Court has ordered at the end of 2016, the continuation of the treatment, but the hospital has appealed. The parents of Marwa, Mohamed and Anissa, had to take action before the State Council (one of the highest courts in France) assisted by the lawyer Maitre Le Bret, who is also the parents’ lawyer of Vincent Lambert, whose case is similar but refers to an adult. After various analyses and meetings of doctors external to the hospital, also this court has ordered the continuation of treatment but has primarily made it possible to create a real question in France on the laws relating to these type of cases, to constitute a precedent and to attest that Marwa was well present with us and not only kept alive by a machine.

How much has been important for Marwa the mobilisation via the web?
A lot, firstly because it has helped her dad through a difficult moment: he thought to be alone and to cry out in vain to save his daughter. The mobilization has also allowed us to sensitize the whole world on the case of a little girl sentenced by a part of the medical body but alive and fighting for her life. As we said, this also raised the attention on certain contradictory laws in France and has also allowed to exert pressure so that the full rights of parents on their own children can be restored.

Now what is the situation of the little Marwa? On your Facebook profile, we read that parents are preparing the bedroom to welcome her at home…
Currently, and after several months of battle, the family of Marwa has obtained a decent apartment to accommodate the baby. Marwa is still hospitalized because her room is being prepared; various works are required such as the installation of a climate control unit but also the provision of a secure and correct environment in order to welcome her in the best possible conditions. Mohamed, her dad, must also learn how to perform the daily treatment for Marwa.

Are the members of Marwa’s family following the story of Charlie Gard?
The parents of Marwa, as well as the association “Jamais sans Marwa”, follow very closely the case of the little Charlie Gard and they are sad to see that the story, the nightmare is being repeated. There are many similarities; even Marwa was ten months old at the time of her admission at the hospital and she has received the same medical judgment. We do not understand how in 2017, in countries like the UK and France, we must fight to keep alive a child who fights himself against the disease and how it is possible to deprive parents of the full possession of their faculties of the right to decide for their own children.

What is the message that Marwa’s family feels they can give Charlie’s parents?
We want to show them our complete support telling them: “Do not lose hope, you are not alone, the whole world is holding hands to sustain you, to listen to you and to your heart but especially to the heart of baby Charlie. There is a bond that unites us through our children that nobody can feel”. Certain cases should not exist, letting a child live should be normal.

Thanks to Marie-Christine Jeannenot for her collaboration

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