Noémie has four wonderful, healthy children. She has made it clear that amyotrophic lateral sclerosis (ALS) is not the end for her and that she values every precious moment she spends with them.
Noémie, who lives in Luxembourg, tells her story to EURORDIS Rare Disease Europe about her diagnosis and how she manages ALS.
Noémie studied at the Luxembourg and National Régional de Nancy conservatories. She performed at the EURORDIS Awards in 2019 giving an unforgettable performance followed by an inspiring speech.
The Diagnosis
Noémie explains that specialized centers do not exist in Luxembourg. Just trying to receive a diagnosis became a long and arduous journey that began in 2013.
At first, her right leg became so weak that she had to rely on a cane. A year later her left leg had the same symptoms making it extremely difficult to walk. She was able to manage with crutches until her arms were affected and she needed a walker. By 2017 the rest of her muscles were affected and she became wheelchair-bound.
Noémie’s breathing problems began in 2018 as well as issues with swallowing. At one point she was hospitalized and needed a feeding tube.
What Is It Like Living With ALS?
Noémie is the first to admit that her life has changed drastically. Yet she quickly adds that it is “not that bad.” She can still go on walks with her husband and children keeping up with them in her electric wheelchair. She says that she feels lucky that her particular disease has been slow to progress.
But singing has always been her greatest passion. She is grateful that ALS has not yet taken that away. She can still sing and she can still perform. She admits that she does not know when that will change.
Noémie still receives invitations to perform. She organizes charity concerts in her hometown to raise funds to help ALS patients.
She readily admits that thinking about the future scares her. For that reason, she does not want to think about what she has lost or what more she might lose. Especially the thought of losing her voice.
Carpe Diem
Noémie emphasizes that she lives in the present. That means she can still sing. She often uses the phrase ‘Seize the day’ (Carpe diem) which to Noémie means making each day count.
The second phrase she lives by is ‘never give up.’ Noémie believes strongly that all things are possible if you have that burning desire to begin a project and then stay with it until it is finished.
She always tells her family how much pleasure and happiness she gets out of life and how much she enjoys being with them. ALS is not the end for Noémie and she will never ever give up.
