Every year, 2,500 children are diagnosed with cancer in France. This is the case of little Aaron, 5 months old, who suffers from infantile orbital sarcoma. His parents talk about their daily struggle.
“Aaron was born on September 6, 2023. When he was born, we immediately realized that something was wrong. His right eye was extremely swollen as if it was going to pop out of its socket.” . These words are those of Fred and Caroline, young parents of a 5 and a half month old little boy suffering from a rare cancer in his right eye: the infantile orbital sarcoma. With emotion and strength, they told us about the daily battle they have been waging since the birth of their baby.
“A quarter of an hour after his birth, a doctor arrived and told us that he thought it was a very aggressive tumor. It took us by surprise.”, confides the dad. A long journey then follows before knowing the diagnosis. “We didn’t know anything about the disease at the start. We had to do tests and wait. It was very anxiety-inducing because we couldn’t answer our family’s questions. The incomprehension and the waiting are even harder to manage when the doctors don’t have any answers to give you either. Unconsciously, my brain said to itself: ‘Don’t get too attached to him, you never know, you’ll suffer too much'”adds Aaron’s mother, who says to herself “paralyzed by the fear of losing him.”
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A very rare disease: “there are less than 100 cases in the world”
A biopsy was finally performed on the newborn. “That’s where we discovered the rarity of his tumor. He has infantile orbital sarcoma. It’s a very rare disease: there are less than a hundred cases in the world today”assures Caroline. “We don’t imagine that we are going to give birth to a child with cancer”she continues. “The day I gave birth, I said to myself: ‘Wow, I screwed up’. Something went wrong. We have to mourn the child we imagined, it “It’s a very difficult journey.”
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For five and a half months, the little family’s daily life has been punctuated by hospital visits, medical appointments, nurse visits, treatments, injections, chemotherapy and operations. On December 1st, Aaron notably underwent an exenteration. “An inevitable surgical procedure which consisted of removing his tumor but also his eye, his muscles, the fatty tissue around it and his eyelids”details his mother. “Today, he no longer has an eye and will never be able to have one again: there is no reconstruction possible. He could possibly wear an epithet (a silicone maxillofacial prosthesis) later, that’s it. is the only possible option.
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Despite this operation, the little boy still has some cancer cells. He is therefore still undergoing chemotherapy and will then have to be treated with radiotherapy for several months. “There is always a sword of Damocles above us. But he has immeasurable strength and we draw ours from him”admits Caroline. “It’s thanks to him that we learn to be positive. He’s a little warrior”concluded Fred.
The fight of the Imagine for Margo association in the fight against pediatric cancers
Caroline and Fred’s fight for their child is also that led by the Imagine for Margo association, created in 2011 by Patricia and Olivier Blanc. Since then, the organization has collected more than 20 million euros and financed 51 innovative research programs in France and Europe. It also mobilizes key health stakeholders to change regulations and raises awareness of the scourge of pediatric cancers. Imagine for Margo accompanies and supports more than 500 families in France.
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To enable the association to accelerate research against childhood cancers, support promising projects, develop innovative treatments and guarantee access to these therapies for all, understanding the mechanisms linked to pediatric cancers is crucial. . Imagine for Margo has notably supported projects such as MICCHADO, MAPPYACTS And BIOMEDE, aimed at identifying molecular, genetic and immunological factors in serious pediatric cancers. It also funds projects in immunotherapies and cellular therapies, including the use of CAR-T cells, to treat difficult solid tumors.
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For more information and to support the association’s work, go to: https://imagineformargo.org/
Section head Society / Psychology / Couple /
Rights of women and children, violence, feminism, gender, discrimination, parenthood, education, psychology, health, sexuality…. Joséphine loves deciphering all the social issues that drive our world today. She you …