Our Stories

Here is a collection of stories and videos from people who have generously shared their experiences of living with MPS. Would you like to share your own experience? Contact us for more information.

Wise Words from Loïc Bydal (MPS IV)

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. Read more>>

Elovic (MPS II)

It’s hard for me to say exactly what the word “Mom” means in such circumstances.  

When Elovic was young, he used to say “Mom” to all the women he met while taking their hands. So much so that the women would laugh and say, “I’m not your mom”.

I didn’t take it personally, I knew I was his mother, and I didn’t mind sharing the word with other women. It was because I was the center of his universe that he said it over and over again. At the time, mom was one of the only words he knew. He would string together whole sentences with mom as the only word, taking hands and pointing at anything that would interest him. The grass was mom, the sky was mom too. With his charming smile, you couldn’t resist the liveliness of his “mom” phrases. I was worried about his language and, I must admit, I couldn’t wait for him to say something other than mom.

Read more >>

Joseph (MPS III)

Francine and Joseph

“All I ever wanted was to have a family. So, when Joseph was born, it was the beginning of everything. When he was very young, Joseph was always racing ahead of the curve. He said his first word at three and a half months, and he was walking at nine months. But, at age one, he started having some health problems – ear infections, persistent runny nose, a protruding belly – and he started to slip behind on his milestones. It wasn’t until he was four that we learned it was likely a type of #mucopolysaccharidosis (#mps). That was when our lives totally changed.

What It Feels Like: My Son Has Hurler Syndrome (MPS I)

When Caroline Fidalgo and her boyfriend took their son, Alex Oliver, for an MRI, she was initially confused as to why the nurse was asking her so many questions about her son’s snoring and sleeping patterns. A few weeks later, Alex Oliver was diagnosed with Mucopolysaccharidoses type 1-H, also known as Hurler syndrome, a rare genetic disorder.

This interview with Caroline, who is now a MPS Canadian Society member, gives a realistic and detailed account about coming to terms with her son’s diagnosis, three tries at a successful bone marrow transplant and her hopes for Alex Oliver.

Read her story here >>

Anisa Elder (MPS IH)

https://youtu.be/1kfCzC0Kfnw
Anisa’s Story (MPS I)

Anisa is a young girl from Canada living with Mucopolysaccharidosis (MPS) Type I. Anisa and her mother, Jen, share their story from Anisa’s first symptoms to her diagnosis just after her first birthday – and a life filled with playing dress up, dance, and hide and seek.

Teuvo Collins (MPS I)

Thank you to the society, donors and everyone involved.”

Arielle Cameron – Serviss (MPS IH)

Brayden Topping (MPS IH)

Brayden Topping (MPS IH)

Hi, I’m Brayden! I was diagnosed with Hurler Syndrome in 2015 and had my transplant later that year at SickKids in Toronto.  Although I have had, and will have many obstacles in life I am a very happy kid! My favourite colour is blue. I love cars, my cat Bentley, and swimming! I make friends everywhere I go and I just love life! – Author: Melissa Cleroux Publish date:  September 6, 2018

Matteo Spina (MPS IH)

Evan Santos (MPS IH)

Melanie Bourdon (MPS IVA)

Heston Letcher (MPS IIIA)

Jordana Kilgour (MPS I)

Loïc Bydal (MPS IVA)

Loic Bydal (MPS IV A)