Telethon. “We try not to radically change our lives”, the daily life of Maël and his family facing illness

On the occasion of the Telethon, Sébastien and Solène, parents of Maël, 7 years old, talk about their daily life and their fight against Duchenne muscular dystrophy from which their son suffers. They adapt every day to reconcile hope, resilience and moments of happiness, while supporting research and impacted families.

February 2021. After several months of waiting, Sébastien and Solène learn that their son Maël, then three years old, has Duchenne muscular dystrophy.

This rare genetic disease progressively weakens the boy’s muscles and disrupts the family’s certainties and prospects for the future.

“We expected it a little, but it’s still a terrible shock.” confides Solène. The diagnosis was announced to them at the Nantes University Hospital, with Maël on his knees. “It was violent,” says Sébastien. “At 3 years old, he didn’t understand everything, but he felt our anguish“.

You have to adapt, life goes on, even if it is different.

Despite the pain, the couple quickly turned to action to offer their son a suitable living environment: moving to a single-storey house, reducing their working hours and seeking specific help became their daily.

Every week, Maël receives care thanks to the Special Education and Home Care Service (SESSAD), which operates directly in his school. “Without this support, juggling work and medical appointments would have been impossible.“, explains Solène. However, access to SESSAD was not immediate: “two years of waiting and cumbersome administrative procedures” were necessary.

The adaptations also extend to leisure activities. In order to maintain an active family life, Sébastien and Solène have invested in specific equipment, such as a hiking stroller or cycling equipment. “We continue to enjoy moments together. Maël loves these outings and his sister Elisa does too. We adapt to maintain a positive family dynamic“, specifies Sébastien.

Élisa, Maël’s older sister, aged ten, must also find her place in this strict organization which leaves little room for the unexpected. To preserve her well-being, she benefits from occasional psychological monitoring and special moments with her parents.

“She must be able to breathe, have a space to herself“, underlines Solène, who is planning a mother-daughter trip to Amsterdam next summer.

We try not to radically change our way of life so that Maël and Élisa feel fulfilled.

Maël’s participation in a clinical trial at Nantes University Hospital marked an important step for the family. Even if the trial was not extended due to significant side effects in certain children, Maël made notable progress.

“We saw improvements after just a few weeks. He was more confident, more mobile. It was a real chance,” rejoices Sébastien. The trial also boosted their hope for future treatments. “The research is progressing. Nothing stops us from hoping that one day, new therapies will emerge.“, adds Solène.

The role of the Telethon goes far beyond raising funds for research. Thanks to the AFM-Téléthon, families like Maël’s benefit from essential administrative and social support. “We discover our rights little by little. Without this support, many families would be destitute.“, recognizes Sébastien.

A message of strength and hope

For Sébastien and Solène, their fight goes beyond the family circle. Involved in the local coordination of the Telethon, Solène helps organize charitable actions. “I couldn’t remain passive. Helping others also allows me to cope better with our situation.“, she explains.

We must keep hope. Every step forward counts.

Despite the challenges that existence imposes on them, Sébastien, Solène, Élisa and Maël prove every day that it is possible to live fully, even with a rare disease. Their story is an inspiring testimony of resilience and unconditional love. Because for them, the main thing is to keep moving forward, one step at a time.

To help the Telethon: afm-telethon.fr or by telephone at 3637 (free call)

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