Felix Brunelle and his family are building a village
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In celebration of Disability Pride Month, throughout July MPR News is featuring stories about Minnesotans with disabilities who are making an impact. See more at mprnews.org/changemakers.
Felix Brunelle, 7, was born missing 46 genes on his 10th chromosome, also known as 10Q26 Deletion Syndrome. It has resulted in multiple diagnoses and Felix has a team of 20 doctors, specialists and therapists, the majority of which work at Gillette Children’s Hospital and Clinics.
He uses an Assistive Adaptive Communication (AAC) device on his iPad to help him communicate and both a manual and Power Wheelchair to help him move around freely.
While Felix’s parents, Haley and Tim Brunelle, are teaching him how to be an advocate for himself, he’s still a 7-year-old kid. Right now, his primary focuses are playing hospital and princesses with his full-time personal care assistant (PCA) and best friend, Nicki Hayes, and conjuring up music with his current obsession (bells).
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He likes hanging out with his two big brothers, Maks and Eli, and reading Cat Kid Comic Club books, then turning around and crafting up his own comics.
When asked what he likes to play, Felix thinks about it for a second, then turns to his iPad to type out each individual word. Haley has programmed common phrases into the AAC device, but Felix can also type out more complex sentences. After he finishes typing out the sentence, he clicks it and the sentence is read aloud in a young boy’s voice.
“Piling all my stuffed animals on me and erupting like a volcano,” the talker reads out. Haley laughs.
“Is that your favorite thing to do? One of them?” She asks him.
The Brunelles helped advocate for a change in Minnesota’s building code to require adult changing tables to be built in new building construction. The law went into effect earlier this year.
Haley Brunelle, also a family engagement in research coordinator at Gillette Children’s, is the co-host of the Rarely Familiar podcast, where three moms of medically complex kids get together to share resources, interview guest experts and amplify the voices of lived experience in the community.
Politics fellow Ellie Roth, who first met the Brunelle family at Disability Advocacy Day at the Capitol, sat down with Felix and his family at their home in Minnetonka to talk about Felix’s experience as a child with rare medical complexities and the importance of parent advocates in the disabled community. Felix’s parents spoke with Ellie while he played nearby.
Editor’s note: The following interview has been edited for length and clarity.
How important are parent advocates in this space?
Haley: In Felix’s case, it’s really hard for him to speak for himself. As a parent advocate, you have to be a guide, be an example.
Tim: Ultimately it’s to give Felix as much independence, as much ability, as we possibly can. And to not solve his problems for him. Our job as an advocate is to try to open as many doors for him, but he has to go through the doorway.
Can you talk a little bit about your journey to becoming an advocate for the disability community? Did that happen right away?
Haley: Absolutely it did not happen right away. I mean, I think you’re just in survival mode. With a medically complex child, it’s just diagnosis after diagnosis. You’ve barely got your head above water for a couple years. Then I started realizing, “Oh, I gotta be real involved with the school, I gotta be real involved at the Capitol, I gotta be real involved.” You know, all these things. If I’m going to get what I need for my kid … not only for my kid, but for everyone else. I always say, “If this is hard for me, what is the person who can’t, who doesn’t speak English as their first language doing?” You know, the privilege.
What are the issues you feel are most important to address in Minnesota?
Tim: My aspiration would be that we would get more people with lived disability experience involved in the way that we write laws and the way that we plan things and the way that we budget and structure things.
Haley: Anything! I mean in architecture, in research, in design. When you design for disability first, everyone wins.
You mentioned that Felix is going to need help for the rest of his life. Do you think about if something happened to you, or when you guys are gone, what that will look like?
Haley: All the time.
Tim: All the time. It’s the superhero movie where the bad guy snaps his fingers and like half the universe disappears. I have that dream about Felix in terms of like, what happens if he’s stuck in the elevator and I disappear? The fear is absolutely there. You balance it by planning. You build a village.
Haley: A gentleman the other day, he had mentioned he has CP himself. We were talking about his experience and how he’s learned to advocate for himself. He talked about his mom and his mom passing away. His mom taught him how to do this and he was in his fifties and he lives on his own. I got teary-eyed when I was talking to him and I said, “I see my son in you.” You know, you get these little glimpses into your future and I think that brings you hope and joy and allows you to keep going.
Correction (July 31, 2024): A previous version of the story misstated the year the adult-sized changing facilities law went into effect. This has been corrected.