Photo de Caroline Marie Fidalgo et de son fils Alex Olivier

It is important for parents to be able to express themselves. Our insights are invaluable in improving services and procedures over the long run. But most of all, it is important for parents to feel that they are heard and that their efforts are not in vain.

Caroline Marie Fidalgo — Alex Olivier’s mother and member of the Advisory Pole

How important is MUSCO for families? 

Q : Why did you feel motivated to get involved with MUSCO?

A : My son was diagnosed in 2016. Because his disease is multisystemic, he is seen regularly by a dizzying number of doctors, specialists and other professionals. At the time we were approached to get involved with MUSCO by Julie Letendre, the MUSCO Inter-establishment Navigator at the time, he was going in for appointments at four different hospitals, in addition to the specialists he was seeing at the CLSC and his specialized school. Ms. Letendre was familiar with the difficulties we had experienced due to the lack of communication between the people involved — not just from one hospital to the next, but sometimes from one department to the next. So, basically, I got involved in the hopes of making life easier for other parents like me.

Q : What has MUSCO meant to your family?

A :The most concrete example is when I received a call from I-CCAN at the Montreal Children’s Hospital after my son had been selected for this service by the doctor in charge of screening patients. I was told what I-CCAN is and that it aims to help families manage multiple medical appointments. I was intrigued. I asked the person on the phone if the service had a link with MUSCO. She was surprised I had heard of MUSCO and said yes. It was really nice to see that MUSCO was already going a long way!

Q : Why do you think an initiative like this is especially important for families?

A : As parents, we are often told that we are our children’s best advocates because we know them better than anyone. But this is not always true. There are times when doctors, specialists and other professionals question what we say, especially with a very rare disease like my son’s. It is important for parents to be able to express themselves. Our insights are invaluable in improving services and procedures over the long run. But most of all, it is important for parents to feel that they are heard and that their efforts are not in vain.