The story of: Alex

I was diagnosed with neurofibromatosis (NF) at birth. I already had more than a hundred café-au-lait spots. Doctors discovered that I had a glioma on each optic nerve, as well as several small brain tumors. I also developed scoliosis during childhood.

At the age of six, I experienced a seizure that left me completely paralyzed for more than a week. Around the same time, I also lost my hearing due to repeated ear infections, although I eventually regained it.

Specialists always told my parents that I would struggle significantly in school and that I might never finish high school. School was indeed very challenging for me. I received support from speech-language pathologists, special education teachers, and private tutors at home. I also had very few friends and limited social interactions. During my teenage years, I had a malignant tumor, about the size of a ping-pong ball, removed from my arm. A few years later, I also had three small but painful benign tumors removed from my neck.

Now, at 40 years old, I have undergone more than sixty MRIs and visual field tests. I have always been closely monitored by several specialists. Fortunately, my condition has remained stable, and my follow-up appointments are now less frequent. Despite the many challenges I have faced, I never gave up and always kept moving forward. My parents constantly encouraged me, and their support made all the difference. Today, I hold a Bachelor’s degree in Physical and Health Education. I have a permanent teaching position and work full-time at a school that serves students with autism spectrum disorder.

Although I have achieved many personal and professional milestones, some challenges remain. The social difficulties I experienced as a child have never completely disappeared. In high school, I was bullied because of my differences. At the time, I was often told to ignore it and that it would eventually stop, but unfortunately, it never did. Those experiences were deeply painful and left a lasting impact on me. Over time, I built emotional walls, especially during my teenage years. My self-confidence was very low, but as the years went by, I worked hard on myself and gradually regained confidence.

Today, I continue to move forward and pursue my goals. I am not currently in a relationship, but I have always dreamed of starting a family. I am currently participating in Quebec’s Banque mixte adoption program through the Youth Protection Department (DPJ) to fulfill my dream of becoming a father. I know I will likely become a single father, but I believe everything I have experienced throughout my life has prepared me to be a good parent. The challenges I have faced have taught me perseverance, compassion, and the importance of never giving up. I hope to pass these values on to my child and provide them with the love and support that every child deserves.

I believe that living with neurofibromatosis has helped me become more persevering, resilient, and determined to make the most of life. It has also made me especially understanding toward students who face challenges of their own. If I could leave parents of children living with NF with just three words of advice, they would be: Persevere. Encourage your children. Support them.

– Alex