8-year-old Carson Tussing is living with the rare, mobility-impacting genetic mutation RYR-1. The diagnosis causes Carson to rely on a wheelchair for mobility to stay safe. In many ways, he is still a typical 8-year-old who enjoys family time, video games, and watching movies.
We talked to Carson’s mom, Illyssa, about how mobility impacts their life, why they’re fundraising with Help Hope Live, and whether anyone could beat Carson’s favorite superhero Hulk in a fair fight.
Did you have any experience with disabilities or rare diseases prior to Carson’s diagnosis?
The only prior experience I had was with autism. His 10-year-old brother, JT, was diagnosed with autism at age 3.
As we were going through Carson’s hospital visits and testing to figure out the source of his developmental delays, we faced a lot of unknowns. We had no idea what caused his muscle weakness.
Carson just went with it: the only struggle was that he didn’t like having a blood pressure cuff at first—and, like any kid, he hates getting blood draws.
It took about a year to finally find the right doctor to identify what he had.
When we first learned about his diagnosis, we were unsure how his body would progress over the years. As a parent, it took a while to wrap my head around it. Without my husband and my best friend, I wouldn’t have been able to handle it.
My heart broke instantly, but I knew I had to keep it together and be brave for Carson.
At first, his brother, JT, didn’t understand that anything was different about Carson. As he gets older, we have conversations with him to help him understand his brother’s diagnosis.
How does RYR-1 affect Carson’s health and mobility?
Carson is no longer able to walk. He uses a wheelchair full-time, and standing for even short periods on his own is getting more and more difficult.
We are in between physical therapists, but he sees a neuromuscular specialist, pulmonologist, orthopedist, and cardiologist regularly.
Our life isn’t necessarily impacted by his care needs—instead, our daily life just looks different than it does for other kids and their families. Carson still has to get dressed and go to school each day. He just requires a little more hands-on help.
He still has the same attitude as any other 8-year-old boy.
Carson has the brightest smile and the sweetest laugh. He will push back and give me some resistance on doing chores.
He can do anything, and he will become an amazing young man someday.
He’s had the same group of friends for a few years, but every once in a while, he’ll make a new friend who wonders why he uses a wheelchair. He will tell them his legs get tired or don’t work.
The amazing thing about kids is that they don’t need a crazy explanation for his mobility challenges. My advice to other parents:
Let kids ask questions and be curious. It’s only weird if you make it weird.
What brings the most joy to Carson’s life?
Carson is the happiest when playing with his brother, JT. They love each other fiercely.
Why is fundraising a part of your life with Carson?
We found Help Hope Live at Abilities Expo Phoenix. We connected with Executive Director Kelly L Green, who encouraged us to look into fundraising.
Fundraising allows us to provide for Carson in ways that go beyond what a normal family has to handle.
For some families, a bathroom renovation is for fun—not to find an ADA-compliant sink that a wheelchair can roll under that can still fit into our bathroom.
Buying a new car? For some families, that may mean trading in an older car to find one that’s a cool color or has great gas mileage. For us, it’s all about securing a wheelchair accessible van.
A wheelchair van is a cost we don’t get any state-based assistance with.
As a parent, you want to provide the world for your kids—but a $60,000+ vehicle isn’t doable on your own, and that’s why you have to be open to asking for help.
300 million people live with a rare disease, and 12% of Americans have a mobility disability. Do these numbers connect you to a larger community?
Yes and no: they are big numbers, but it’s almost like saying, “there’s 300 million people with blue eyes.” Add in any other trait—like brown hair, female, right-handed—and that pool gets smaller and smaller.
It can be discouraging and overwhelming to live with a rare mobility-impacting diagnosis if you can’t find your tribe.
I had the amazing opportunity to travel to attend the global RYR-1 conference in 2022. It allowed me to connect with families both in my state and in other states.
You document Carson’s life on a blog. Why is that important to you?
It’s us showing that we are not broken, and it’s okay to ask for help.
Those two statements took me a while to say out loud. I still struggle with it sometimes.
I think it’s important that we show the hard parts of our lives as well as the good parts: it can bring us closer together, and it helps others know that they are not alone.
Not everything about life with a rare disease is doom and gloom.
Don’t get me wrong: some days, it’s a lot of tears. But a lot of ways, it’s smiles and arguing over homework—just like every other family.
I wish more people knew that you don’t need to talk to me about my son’s future as if you’re diffusing a bomb.
It’s okay to ask how he’s doing, or what it looks like for him to do certain activities.
What does hope mean to you?
Hope is not a cure or a fix-all—it just means we can make tomorrow better than today for Carson.
It may be as simple as shoes with a zipper or a vehicle big enough for him to roll into. But hope is knowing that people are with me in making those things happen.
A Few More Questions for Carson
Is Space Jam still your favorite movie?
I think it’s Rampage now.
Do you like school?
Yeah.
What’s your favorite video game?
Hmmm that’s a really hard one because there are a lot of video games I really, really like. Maybe NBA 2k24 because it’s really fun being some of the characters and going up against the other teams. I have a lot of fun.
If you were a football player, which position would you play?
A defender because it sounds fun to hold someone in place and keep them from tackling somebody.
Where will you go on vacation when you win the Super Bowl?
Hawaii.
Is there any superhero Hulk could NOT beat in a fight?
Superman.
Why is Hulk your favorite superhero?
Because he just is.
You can keep up with Carson’s adventures at carsontussing.com and make a donation in his honor at helphopelive.org.
Written by Emily Progin
