All Things Levi: A Rare CMTX4 Patient Story

All things Levi.

Such a generally fun-loving little boy, yet such a complex bundle of medical conflagrations. All blended and tied up in a robust package that makes Levi a unique little man.

Levi is a five-year-old boy, who is very social. He likes to play with his tablet, watch videos, play games, squish Play Doh, and go on walks.

“He’s going to be Lightning McQueen from Cars,” Bekah remarks. It’s his favorite.

He is a huge fan of Disney’s “Cars” movies and Netflix ‘s “Super Wing” series. Most often he draws attention to himself by making a loud noise to get you to look followed with his huge dimple laden cheeks and smiling face.  Levi lives with his mom, grandma and grandpa (Oma and Opa), Nana, and two dogs (Bo and Bentley).

He was diagnosed with CMTX4 by The Cleveland Clinic in 2016 through their Genetics Department. It was also determined that he has ADHD, audiological neuropathy, and suffers from substantial tremors and seizure-like episodes.

I’d love to tell you that Levi is easy to care for, that he’s a compliant child, or that the room is a quiet place when he’s in it. However, none of those are even remotely true. Levi is confidently his own boss; he wants what he wants when he wants it (it doesn’t happen that way, to his chagrin) and without hesitation he’ll voice his disagreement with you in quite the loud manner. His response reflects his fighting mechanism and it is the same mechanism that he subconsciously draws from when medical challenges come his way.

“Levi doesn’t let his disabilities slow him down that’s for sure. He has a determination that is incredible.” – Bekah, Levi’s mother

Despite it all, Levi is happy and full of curiosity. He enjoys exploring his environment in his wheelchair although, from time to time, you’ll find him scooting around on his behind because he wants to get there faster. Even with his disability, he has a tenacity and spirit that is infectious. His mother does worry because he does not let anything get in his way when his mind is set on something. She calls him her little daredevil, as he is occupied by curiosity.

He’s resilient— able to bend under pressure and snap back. Over and over again, repeatedly. Since February 2018, Levi has had eight trips to the ER and seven hospital stays of at least five days each, all resulting from issues stemming from his genetic disorder, CMTX4. There was the run down the hall from his regular hospital room to the PICU with a nurse yelling his respiration rate as it was rapidly dropping—an entourage of nurses and assorted doctors chasing the bed as he was clearly in distress.

The resulting intubation upon reaching PICU proved the seriousness of Levi’s condition, especially to his mom, Rebekah (she’d been part of the hallway race as well, frantic as she listened to the respiration countdown). His resiliency proved itself then, as it continues to now. Levi’s medical challenges remain at the forefront on a daily basis, yet he adapts and continues on. His robust nature gives him the edge; he just doesn’t know any differently. So it goes, from one day to the next.

There have been many daily struggles with Levi and yet even more blessings abound and surround him. Life is better with a Levi smile, a Levi hug and an encounter resulting in a Levi laugh.

Written with the help of Sandi Guy Eisele Broadway, Mother of Bekah Broadway, and Grandmother of Levi Broadway.

About the Author: Quentin Martin is a retired professional photographer and has lived a somewhat interesting and challenging life. He was diagnosed with CMT, a neuromuscular disease, at the young age of 11 years old and lost his vision at the age of 12, which sent him spiraling downward in deep depression. He accomplished his early education from the seventh to the 12th grade at the Academy for the Blind in Macon, Georgia where he received a great education. It was here that he met some really encouraging people that taught him not to let his disabilities ever get in his way of living life to the fullest. 

During Quentin’s senior year of high school he began to spontaneously regain his vision, and after finishing school, he got his degree in photography a few years later. He always loved photography since he was a little boy and he decided to pursue this route to make up for what he lost those years without vision. 

Quentin now dedicates himself to helping others in any way that he can that deal with CMT, as well as vision loss through his Facebook page, quentinscauseforcmt. So many people were there for him throughout his life and he says “It is the least that I can do, however small an impact I may make on someone’s life.”

He now resides in South Georgia with his very loving puppy Keagan, and continues to do the best he can and lead a fulfilling life.

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email
Close Menu