The story of: Maelle

I was two months old when the start of a great journey began for me and my family. How I embarked on this journey was a mystery. My follow-up at the CHU Sainte-Justine was my lifeline as well as my source of comfort and stability. I had follow-ups every month to understand and monitor the evolution of the disease. The appearance of brown spots was the trigger for my diagnosis. This disease was full of surprises.

The first was the discovery of a plexiform neurofibroma in my belly. There was nothing to do about it…just let it grow with me, like my best friend. Follow it closely. This was just the beginning of the discoveries in my little body. At the age of two, the doctors diagnosed me with scoliosis, a complication of NF1. I didn’t understand what was going on. I was young, and for me, it was nothing. Monthly appointments were normal and part of my daily routine. CHU Sainte-Justine has become my second home.

The start of the elementary school went according to plan. It was the calm before the storm. I was beginning to understand how different I was from the other kids. It wasn’t easy. The other kids didn’t understand why I was different and why I always had to leave school early to go to the hospital. I tried to hide my difference—and myself

In April 2009, the doctor told me that my back needed support. My spine could no longer stand on its own. My scoliosis was progressing too fast. I had to wear this corset every night to slow the growth of my curves. It was blue, and it, too, had become a best friend. Unfortunately, it wasn’t enough.

On my 10th birthday, in November 2009, I had to get another corset. This one followed me everywhere, and I had to wear it as long as possible, day and night. A minimum of 20 hours. It made me feel very self-conscious. I felt even more different from the other kids. I tried to hide it with bigger clothes. Sometimes it was just impossible. Some people knew, but I was afraid.

By April 2012, there was no point. Walking for long periods was difficult. My spine was too far out of alignment, and I needed surgery. It was in September 2012, when I went back to high school, that the doctors called me to go back to the hospital.

I remember, on the morning of September 25, 2012, I was back in hospital for 66 days. The doctors preferred to put me in traction to give my spine more flexibility. This stay was full of emotions, highs and lows.

During this hospitalization, the people we met and the care we received were very enriching. The memories are beautiful. My favourite days were Tuesdays and Thursdays. They were the Dr. Clown visits. The clown doctors were a great help to me. Every time they came, I forgot all the pain and sadness. It was even thanks to them that I was able to walk again after my operation. My Tuesdays and Thursdays were certainly full of laughter and smiles. Without them, it would have been difficult. On the days when they had to go away, I felt sorry for them. They make the children happy, and meeting them is an essential part of any stay at the CHU Sainte-Justine.

Growing up with illness brings me lots of positives. November 20, 2012, after two months of traction. It was a big day. The operation lasted more than 9 hours, and it helped me gain more than 10 cm. Overnight, I had no more back pain. Rehabilitation was long but effective. Thanks to the CHU Sainte-Justine, I could return to a better quality of life more quickly. The CHU Sainte-Justine works miracles. Without the team, I wouldn’t be where I am today.

NF1 is more conducive to changes during puberty. In my case, it was August 2014. I go in for my follow-up nuclear medicine appointment. But at the time, it was more like nuclear bomb-style news: the discovery of a tumour on the sacrum. A rare location.

For a few months, the doctors didn’t know what they were going to do. I was full of anxiety. Appointments every month, thoughts from the doctors, long discussions in the hemato-oncology rooms. Finally, it was in June 2015 that they decided to remove it by operating on me. Great news!

The tumour was not dangerous. I can now breathe and feel well. Again, this tornado in my head would have been much bigger without the staff at the CHU Sainte-Justine. The support throughout the process was exceptional. The CHU Sainte-Justine feels like home.

This disease teaches me something every day. Some days are harder than others. It has taught me to live one day at a time, not to worry, not to think about tomorrow. No one can predict how this disease will evolve. It’s not for nothing that the disease is nicknamed a pandora’s box. I tell myself every day that I’m not alone. I’m in good hands.

Accepting the disease was difficult. Today, I see it as a friend. I have to listen to it, to my body and accept its signals. I continue to live my daily life as much as possible without thinking about tomorrow. This illness has brought me a lot of positives.

– Maelle