“Our child no longer has an eye and will never be able to again, we are paralyzed with fear”

“Aaron was born on September 6, 2023. When he was born, we knew right away that something was wrong. His right eye was so swollen it looked like it was going to pop out of its socket.” .

These words are from Fred and Caroline, parents of a 5-and-a-half-month-old boy with a rare cancer in his right eye: Infantile orbital sarcoma. With emotion and strength, they told us about the daily battle they have been fighting since the birth of their child.

“A quarter of a year after he was born, a doctor came in and told us he thought it was a very aggressive tumor. It took us by surprise.”, gives faith to the Father. A long journey before knowing the diagnosis follows. “We didn’t know anything about this disease at first. We had to do tests and wait. It was very worrying because we couldn’t answer our family’s questions. The inaccessibility and waiting is even harder when you have doctors to give you. But there was no answer. Unconsciously, my mind told itself: ‘Don’t get too involved with him, you’ll never know, you’ll be in too much pain'”Adds Aaron’s mother, who calls herself “Paralyzed by the fear of losing him.”

Very rare disease: “there are less than 100 cases in the world”

Finally the newborn was biopsied. “That’s when we discovered the rarity of his tumor, an infantile orbital sarcoma. It’s a disease that’s very rare: there are fewer than a hundred cases in the world today.”Caroline assures. “We don’t imagine we’re going to give birth to a child with cancer.”She continues. “On the day of the birth, I said to myself: ‘Wow, I screwed up’. Something went wrong. We have to mourn the child we conceived, it is “a very difficult journey.”

For five and a half months, the little family’s daily life is punctuated by hospital visits, medical appointments, treatments, injections, chemotherapy and operations. On December 1st, Aaron underwent a significant exenteration. “A necessary surgical procedure that included removing his tumor but also his eye, his muscles, the surrounding fatty tissue and his eyelid”

Details of his mother. “Today, he no longer has an eye and will never be able to again: there is no reconstruction possible. He may wear an epithet (a silicone maxillofacial prosthesis) afterwards, that’s the only possible option.

Despite this operation, the little boy still has some cancer cells. So he is still going through chemotherapy and then he will have to be treated with radiotherapy for several months. “We always have the sword of Damocles over us. But it has immeasurable power and we draw ours from it.”Caroline accepts. “It’s thanks to him that we learn to be positive. He’s a little warrior.”Fred concluded.

Imagine Fighting for Margo Association in the fight against childhood cancer

Caroline and Fred’s fight for their child is also managed by the Imagine for Margo Association, created in 2011 by Patricia and Olivier Blanc. Since then, the organization has raised 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 raise awareness about the scourge of pediatric cancer. Imagine for the Ways accompanies and supports more than 500 families in France.

Understanding the mechanisms involved in pediatric cancer is important to enable the Association to accelerate research against childhood cancer, support promising projects, develop innovative treatments and ensure access to these treatments for all. Imagine for Margo has significantly supported projects such as MICCHADO, MAPPYACTS and BIOMEDE, which aim to identify molecular, genetic and immunological factors in severe pediatric cancers. It also funds immunotherapy and cellular therapy projects, including the use of CAR-T cells to treat difficult solid tumors.

For more information and to support the association’s work, go to: https://imagineformargo.org/

Head of Department Society / Psychology / Couple /

Women and children’s rights, violence, feminism, gender, discrimination, parenthood, education, psychology, health, sexuality…. Josephine loves to understand all the social issues driving our world today. She you…