MarionName: Marion Brossier

Age: 24

Where do you call home? Bordeaux, France

Education: I have a degree in corporate management with a concentration in finance [STG (Science Technique et Gestion) option CFE (Comptabilité et Finances des Entreprises)], a license in trilingual communications [BTS (Brevet de Technicien Supérieur) AM (Assistante de Manager)], a certificate in accounting and administration [ASCA (ASsistante de Comptabilité et d'Administration)], and a certificate in European studies [PCIE (Passeport de Compétence Informatique Européen)].

Who do you live with? My boyfriend of 2 1/2 years and I live together in an apartment.

What's a typical day for you? I no longer work because of the evolution of my fatigue. However, I have been a model for a few months and I really enjoy it.

Marion collageHow long have you known you are living with FA? I was diagnosed in 2007 (13 years old) and not explained it until 2 years later when learning of my heart condition.

Are there any others with FA in your family? I have two brothers; we are triplets. Jean-Rémy is a carrier and Thomas died 6 months ago from FA complications.

Describe a transition you have had to take due to living with FA. I had back surgery at age 16 and began using a wheelchair full-time. Shortly after, I joined a disability program teaching life skills and therapeutic approaches for reduced mobility [IEM (Institute of Motor Education)].

What do you like to do to stay active and what type of exercises work for you to stay strong? To stay active, I do physical therapy, muscle strengthening, and pool exercises.

When FA gets you down, what do you think/do to feel better? Sometimes, I just need to talk to my boyfriend, he takes my mind off the loneliness. Oh, and playing with my cat!

Marion collage 2What is one way living with FA has POSITIVELY affected your life? Without FA, I may not have met my friends and my boyfriend. Plus, I have a newfound vision on life.

What is a favorite motivational quote of yours? <<l'Espoir fait Vivre>> "Hope brings life." Or <<Rêves ta vie en couleurs, c'est le secret du bonheur.>> "Dream your life in color, it's the secret to happiness".

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Believe in your dreams and plans, despite every 'what if.'

What is the first thing you want to do when a cure/treatment to FA is found? When a cure is discovered, my mentality will need some adjusting before I know what I want to do first.

Tell us a little more about you... Social media has become my best tool for raising awareness of this disease. I think that all people with this disease have the will to fight against its evolution while being aware that the disease is present. Personally, I use FA as a springboard in modeling, to change people's perception of my wheelchair and the stereotypes that go with it. Please follow me on Facebook and Instagram.

LealanSims sig 16 mtc