I work as a marketing and sales director for a large hospitality company and have moved countries often. As the daughter of a French diplomat, I spent many years abroad -I was born in New Caledonia- and later in life, I settled temporarily in Costa Rica, where both my kids where born. There, we enjoyed what they call “pura vida” (pure life).
But three years ago, neurofibromatosis (NF) changed our lives forever. My wonderful son Titouan always had this thing in his back but the dermatologist kept telling us that it was nothing. Deep inside I always felt that something was not quite right, so when we relocated from Costa Rica back to France, we consulted another dermatologist. Straight away she suspected that Titouan -who was already 7 by then- may have a “plexiform neurofibroma”. The biopsy confirmed it. Then, the nightmare began.
For a whole year we kept visiting different doctors and children’s hospitals in Paris: dermatologists, neurosurgeons, paediatricians. Their prognoses were daunting, and I felt devastated. It was then that I decided to google NF and found the Children’s Tumour Foundation (CTF) in New York (USA). I wrote to its president, Annette Bakker, and she replied a few hours later with very helpful information. Finally, there was hope! CTF has become an important part of our lives and Annette Bakker and Michele Przypyszny are two of the women I most admire in the world as they have dedicated their lives to find a cure for NF.
I do not want any family to face and struggle alone the way we did, so now, I am very much involved in promoting NF awareness in Europe and raising funds for medical research to find a cure for this disease alongside CTF. I wrote my Master’s Degree Thesis from the Grande Ecole ESSEC Business School about CTF. I even organised an event in Paris and invited former French President, Nicolas Sarkozy and Patrick Bruel, a famous actor and singer. It was a huge success!
Hippocrates said that everyone has a doctor in them. I guess he was right. So, we absolutely must contribute any way we can. As my grandfather used to tell me, “Kindness and humanity are the key to personal and professional success”. I always keep his advice in mind for anything I do. Unfortunately, he passed away last March due to COVID-19. He died the way he lived. He refused reanimation to make way for younger patients.
Today, Titouan is a wonderful and brave 10-year-old boy. He does not have the gene responsible for Neurofibromatosis Type 1 (NF1), but an isolated plexiform neurofibroma (NF1). It needs to be checked twice a year as it can grow. Still, as a mum I worry. But we must never give up hope. I often remind my children of Oscar Wilde’s quote: “Shoot for the moon. Even if you miss, you will land amongst the stars”. This is the way I want my kids to live. And it is also what I feel is happening with NF research thanks to our collective effort.