Loïc Bydal – MPS IV

May 24, 2024 | Uncategorized

Loic passed away in February 2024. He was a courageous and determined being and touched the lives of many. Here is is letter to you all recounting his journey in his own words. The original French version is posted below the English translation.

“Good evening to all, this evening, I would like to inspire you all to have faith in yourself and to persevere in your life.

However before entering the principal topic, I would like to first present myself properly and talk about my past. My name is Loic Bydal and as you might suspect, I was born with Morquio Syndrome. Before I talk about myself, I would like to recount an anecdote concerning my mother and how she helped me develop and keep an unshakable faith in myself since my youngest age. The anecdote takes place when I was two years old. After two years of research, here comes my diagnosis, I have Morquio Syndrome. Since as long as I can remember, my mother always told me stories of the night giving way to the day, she cried the whole night thinking of how I would grow up with bone malformations, dwarfism, health issues, how I would be perceived by crowds and people that did not know me, but also after drying her tears et appeased her heart, she took the decision to raise not by how to live as a victime of my differences, but by being proud of what they brought me as unique. This decision is certainly what I am most grateful for, but also the proudest she has done because had she decided something else I would be radically different, radically less human. This is why mom, a big thank you is always present in my heart.

So here I am, as far as I can remember, I have always been a person with generosity and a loving heart, brave, but mostly with faith in myself. I saw and see life not as a complexity, but a simplicity and that will be forever.

At the age of 7 or 8 years old, I started to be a human tester pour vimizim, the treatment that slows down the progression of Morquio. As such, each week from Sunday to Monday, I would go and from Montreal and Gatineau, my birth city, in order to receive this treatment. I still remember all those hours spent in the train. By chance, the company, Biomarin, the company that holds the Vimizim patent, would reserve first class tickets for me and my mother. The road was dotted sometimes with land as far as the eye can see, sometimes trees which seemed very blurry while the train took us to our destination. I also remember the small chocolate that ViaRail gave out, one with dark chocolate and another that tasted like vanilla. I also remember the wonderful people I met through these trips.

Then one day, I had an asthma attack, in Montreal during the Vimizim tests I had an asthma attack. An asthma attack so bad that I had to be urgently intubated, because no matter what steroids they gave me, once the effect was over I couldn’t breathe, suffice to say it was a very intense experience. So thanks to this intubation, after being put in an artificial coma, I could breathe without problem.

Only, unfortunately, during my induced coma. My spine lacked oxygen and I lost all motor control and feeling in my lower body. Doctors don’t know what happened. Honestly, I couldn’t tell you how I felt when I woke up, because I don’t remember, but what I can tell you is that that day, I had entered a whole new phase of my life, a phase where I had to relearn how to speak, to express myself, to live.

I don’t remember what emotional baggage I had, but what I know for sure is that with perseverance and faith in myself, I worked hard to regain control of my body.

A month or two have passed and the sentence is final, I will have to live with a tracheotomy all my life, because my airways have become too small to have a supply of oxygen for this small beloved body and given the complexity of my care, I have to stay in the hospital, because my parents could not ensure this at home without them slowly dying.

You see, today I speak in a high-pitched voice, but I had to make an effort to speak. I am someone who is difficult to get into a major anger. However, early in my learning to speak, I once became angry with myself. So angry that my mother calls it one of my biggest angers, and yet today I’m here in front of you talking about it. And that means I persevered, I achieved my goal. Once again, thanks to perseverance and faith in myself that I never gave up.

The years pass and I have become the curious little being, full of life, but above all, with a generous heart who now only thinks about how to illuminate faith, love, perseverance, the flame of life that there is in every human being.”

Loïc Bydal, 15 ans