A Mom’s Perspective: A Son Living With Chiari Malformation

Life is a journey and we all have a story to tell. We love telling real stories from real families who are making a difference.

It is our honour to share a story that has touched our hearts and many others who have had the pleasure to meet Steven Spice.

Steven is only 10 years old and is already making his mark inside the sports entertainment world. He is charismatic, brave and one of the strongest kids we know.  Even though Steven is living with Chiari Malformation, he doesn’t let that bring him down.

We had the opportunity to sit down with his amazing mom, Crystal to learn more about Chiari Malformation and the difference they are hoping to make.


When did Steven get his diagnosis? Can you explain what Chiari means, in particular with Steven?

They say that you always remember certain dates in your life journey. Well the day of Steven’s diagnosis will be forever etched into my memory as the day my life changed and I watched my son’s future change before my eyes.

Steven was listed as one in a million kid as the size of his Chiari and Syrinx, he should have had a stroke or been paralyzed.

We had fought for a year to get a diagnosis for Steven  as we had over ten doctors tell me that I was crazy that there was nothing wrong with Steven. However, we finally met Dr. Howard from Sick Kids Hospital in the Orthopedics Department who did not stop until he could find an answer for us. Steven was diagnosed with Chiari Malformation Type I on November 23, 2016. He was rushed in for emergency brain and spine surgery as he also had a secondary condition called Syringomyelia which is a fluid filled cyst in his entire spine that was crushing all of the nerves in his spine.

Steven was listed as one in a million kid as the size of his Chiari and Syrinx, he should have had a stroke or been paralyzed. The fact that he was walking and talking was a medical miracle! Steven had his first brain surgery which we went with the more invasive one because we wanted to hopefully avoid another one down the line. Unfortunately, that did not stop the loss of feeling in his right side which made him have a second brain surgery three weeks before his 7th birthday.

In regards to Steven, what does it mean for Steven? It means constant pain and it means a lot of isolation because he is not allowed to do a lot of things that regular kids can do like play in playgrounds, no roller coasters, no bouncy castles or trampolines, sometimes even walking is hard for him.  He can never participate in sports like soccer or wrestling because those things could kill him.

How was the journey to the diagnosis?

The journey to his diagnosis was a difficult one as all of his symptoms had  a logical explanation for his age. However, the one thing that didn’t was a shoulder pain that wouldn’t go away. After being told that I was crazy and that nothing was wrong with my child by ten doctors. I finally got Steven referred to Sick Kids Hospital where we finally had one doctor listen to our concerns. This doctor though there was something happening and that was deeper than the surface.

It was a long tough year process full of countless X-rays, CT scans, blood work and then finally a full body MRI and Brain Scan. Once the MRI and Brain Scan were done, that is when it was determined that Steven would need emergency brain surgery to save his life.  Steven was unique as he was listed as the one in the million kid that was walking and talking when he should have been paralyzed or had a stroke.

How has life changed for you and your family since?

Life has been tough! There are days we have plans and have to cancel them as medically he can’t handle it. Meaning we have to cancel on a dimes notice. There are no trips to places that he could get hurt such as Canada’s Wonderland and Sky Zone. This is hard as Liam (Steven’s brother) can do them but Liam doesn’t want his brother to feel left out.

As a mom it pains me to know that he has said he can’t take the pain anymore.

It has changed the working dynamics for our family. I have reduced from full-time to part-time and work opposite shifts. This way one of us can always be with Steven to aid in his care. It is losing our house in 2019 as we could no longer hold onto it with taking constant time off work to pick up Steven from school on bad days. Then not being able to have an apartment and ended up homeless for three months living in a hotel room.

Then, the pandemic hit and we have to be extremely careful with who comes near him and where we go as a family. It is a constant fear and anxiety when we are away from him. As a mom it pains me to know that he has said he can’t take the pain anymore. Also the fact that now due to a procedure at Sick Kids Hospital he now suffers from medical PTSD. There are trigger words that we can not say and we have to teach people not to say around him as well. Our whole world has changed.

If you can name one thing that has truly helped you and your family cope, what would that be?

In one word…wrestling! The wrestling community has embraced Steven fully and keeps him fighting. When wrestlers take the time to sit down to be interviewed by Steven on his YouTube channel, SWJ – Steven’s Wrestling Journey, makes a difference. To have people like Scott D’Amore from Impact Wrestling always makes sure Steven has front row tickets to every impact show lights up Steven’s eyes with joy. When T-Bar from WWE Raw calls Steven to play facetime games the night before he goes in for surgery gives the strength Steven needs to keep fighting. There is a list of so many other wonderful things that truly gives Steven hope to keep going.

These moments mean the world to us a family, especially to Steven who can finally just be a kid.

The other thing that has truly helped us cope as a family is an organization called Starlight Foundation of Canada who provides Starlight Day Brightener Wish to families like ours where we can go to places like the Museum, Ripley’s Aquarium of Canada and so much more.  These moments mean the world to us as a family, especially to Steven who can finally just be a kid.

Steven has a great catch phrase of “Be Yourself.” As a warrior mom, what would be your advice or catch phrase to other parents?

“Be yourself” comes from Steven being so excluded with regards to a lot of things. However, he knows that no one can be him as we are all special in our own way and he hopes to continue to inspire people to know that it is okay for them to be different.

As for me, it may sound a little cheesy but truthfully there are a few that I live by now.

Listen to Your Intuition

The first is “Listen to your intuition.” If I have learned anything, it would be that if I didn’t listen to mine or pushed to get answers, Steven wouldn’t be with us today. Once I was told at Sick Kids Hospital by a front desk administrator, “You know your child best, these doctors see hundreds of people a day, so if you say that there is something more then you may be right because you only see one person your child and you know them best.” I have never forgotten her words even now 5 years later.

He is truly inspiring and shows me and everyone around us that we should never give up.

Never Give Up

The other two come from Steven’s hero (John Cena) – Never Give Up! I see my child in pain daily and he faces all of his battles head on, never wavering in his strength. He is truly inspiring and shows me and everyone around us that we should never give up.

Control the Controllable

The second is Control the Controllable.  This one has been hard to learn as I always lived in a controlled environment. However, five years ago my life changed. It became chaotic and unmanageable at some points, but I can wake up every morning and hug my little warrior. I can control my diet and I can control how I react. I can not control new doctors and new surgeries; however, I can control I react to these situations. I have learned that when I can’t control it, then I don’t worry about it and it has helped a lot.

Anything else you would like to add?

Steven is my hero! He gives so much of himself, despite everything that he goes through.  He is fighting to change the way his condition is looked at as it is invisible to the human eye. People look at him all the time and say, “you look like you’re fine.” This is where the saying comes in, “never judge a book by it’s cover,” as chances are you will miss a great story!

Steven wants to provide hospitals with the resources needed to further their knowledge of Chiari, so no other child will have to go through what he did. This is why he hopes to raise enough money to open the Chiari Research Fund at Sick Kids Hospital. This fund could open more doors for future kids.

Lastly, follow his journey, I guarantee you he will amaze you.

A special thank you to Steven’s mom, Crystal, for her time and sharing their family story. An inspiring story of the real life warriors that have imprinted our hearts.

We have been inspired by Steven and his family so much that we have donated to his amazing fundraising campaign to create the first ever Chiari Research Fund in Canada. If you would like to help Steven make a difference in the lives of other children, click here to donate.

As a special treat, we hosted our very first interview (featured on our YouTube channel) and our special guest was Steven himself. Check it out by clicking below and you will see how amazing this 10 year old is!

Like Steven says, “Be Yourself.” An inspiring person who is showing all of us that many battles may not be visible so let us all be kind to one another always.

Until next time…Happy Parenting!

-Momma Braga

Leave a Reply