A story in progress

The story of Melissa

I was born in the early 1990s in Quebec, Canada. There was nothing special about my birth and nothing that could let anyone guess I might have Morquio Syndrome. When I was about six months, my mother started to worry about a bump I had on my back. She inquired about it during my doctor’s appointment, but they said I was fine. They might have done some tests, but there was nothing worrisome and so my mother kept on with her life. A short while later, my brother was born; my mother having been told I was fine.

During my young years, my mother kept pushing for answers. She knew something was not quite right. She might’ve been a young mother (mid-twenties by then), but there were some signs she couldn’t mistake. I was a mighty talker, but a later walker. I sometimes sat awkwardly and didn’t enjoy walking as much as my pairs. After misdiagnosing me (they announced first I would be blind and die) and testing negative for Morquio, my mother was in need of a change. She asked for our files and went for a different opinion. The new hospital was more experienced with rare disorders and quickly found out we had MPS IVA. With this type of MPS, the X-rays tell a long story.

At that point, the routine for my childhood was being set, unbeknown to my family: medical appointments, surgeries, conferences, school and whatever fit in between. Until I hit first grade, it was quite difficult for others to know I had a medical condition. I even took ballet classes and didn’t use a wheelchair. However, the academy I went to was on the second floor of a building and by the time I turned seven, I told my mother I couldn’t do it anymore… It was too painful. 

The same year, I had my first two surgeries, one week apart. They were the most difficult surgeries I’ve had so far. My personal theory is that orthopaedic surgeries are more painful than neurological one, but feel free to tell me otherwise. The year after, I had my third surgery for the neck and two years after that one, I had my fourth: back surgery. I never thought for a moment my experience was any different than other children my age and my parents never taught me otherwise. They never sat me down to tell me I was sick or that I should be more careful. It wasn’t necessary.

Let’s just skip over high school. It’s not that interesting. In Quebec, we have a transition period between that and university. It was the time I discovered my interests and myself. I first started studying in human science (biology, chemistry, etc.) and decided maths weren’t the right fit for me. I dabbled slightly and discovered social sciences. At that time, I was enrolled in a clinical trial for Vimizim which also required some of my time and energy. It required a bit more scheduling let’s say.

I’ve always felt privileged in life. My mother worked as a teacher with children in lower economic backgrounds and I knew not everyone had enough to eat. I knew that, even though I was raised by a single mom most of my life, to have a loving parent is a great advantage. I knew I was lucky to have access to quality health care. When I discovered social sciences, I felt it was time to pay back what privileges my society gives me. During that period, I enrolled in a club that participates in the National Model for the United Nations and travelled by myself for the first time. I discovered what I could do and it gave me strength and power. At that point, my extracurricular activities increased. I’d been doing piano lessons since the age of 7, but had stopped recently and decided to help around in my community (local and national). 

I enrolled in university in political science and paid my way through school with help from my mother and scholarships. Learning was and will always be an escape for me. If my body doesn’t always allow me as much freedom as I would like, my mind is boundless. You can guess I wasn’t done… So after I graduated and I decided to do a master. With the help of my other scholarships, I even funded my field research in Turkey for about three weeks. Let’s just say, it put to shame those that were fully mobile and were not going the extra mile for their thesis. 

That brings us almost to now. I was still waiting for my final decision when I started to apply for work. I had more things to consider than others: medical insurance, stability and accessibility. I also had less experience than my colleagues because in between treatment, university and volunteering, there wasn’t much time left. Still, I got a job before I received my diploma in the mail (thanks COVID). It’s an interesting transition from studies, but I have a great employer. Thanks to COVID, I get to work from home and can even do my six hours ERT during work. It’s a challenge some days, but I manage.

I hope this story reminds you the limits are in your head. When I encounter difficulties, I sometimes struggle, but it is this experience that makes me stronger; that makes me unique; that makes me valuable. These challenges I live, they are my strength. I use them to understand others’ struggles and to help them. I use them to improve the society and the world I live in. It is with this diversity of perspective that we can find ways to help each other and be better. You might sometimes find it overwhelming and it’s OK. Being strong isn’t about not feeling or crying. It’s about using it to grow as a person. It’s when you find a solution to the hardest challenges that you realize you are a warrior; a badass one at that!