Doctors Look to Super Heroes to Help Child Fighting Dystonia

Matthew Merryman, a seven-year-old boy battling a rare form of brain cancer, is a fighter. Point blank.

In an article recently posted by The Frederick News-Post out of Frederick, Md., Merryman’s story is told—his diagnosis, the support of his family, and their painful road to recovery. Only a child, he’s already undergone numerous brain operations and over 34 different types of radiation therapies including chemotherapy.

Since he was a baby, Merryman’s parents knew something was… different. Matthew’s mother, Tina, tells the Frederick News-Post about her son’s early signs of the condition,

“he had an off-balance gait, he would fall over, get sick a lot, and had a downward gaze.”

After several tests, it was determined that Merryman had a rare form of brain cancer—doctors just didn’t know what kind, but later determined it was a papillary tumor of the pineal region. At the time, this diagnosis had never been seen in anyone in the world under the age of five.

But now, as an additional side effect to his extensive treatments, Merryman has developed dystonia.

This rare disorder affects the firing of brain impulses to the muscles causing them to act uncontrollably leaving the operator. The condition can cause a great deal of pain, and poor Matthew has been seeing this first-hand.

This summer, however, his family relocated to Gainesville, Fla. to receive treatments for the disorder, in the hope that Merryman will one day be able to lead the normal life every child deserves.

The Merrymans next course of action is to have Matthew undergo a procedure that seems more superhero than anything called deep brain stimulation. This procedure implants electrodes directly into the patient’s brain and fires signals from pulse generators placed on the chest to correct functions that dystonia often screws up. The family will be conducting this at the University of Florida Health Shands Hospital and the UF Health Center for Movement Disorders in Gainesville.

Iron-man
Matthew is not only a great inspiration to other kids living with dystonia, but he’s pretty super as well. Comic book hero Iron Man (Tony Starks) lives with the assist of a pulse generator on his chest as well.

A month from the implants are placed, computers will be placed on either side of his chest and electrical impulses will be sent to shock certain parts of his brain. The outcome, they hope, will allow electrodes to “re-spark the connections that dystonia causes to be interrupted.”

Luckily, insurance covers much of the treatment, but there are still several out-of-pocket expenses. The Merryman’s hope to raise some of the remaining expenses at a softball tournament held in Matthew’s honor.

“Matthew’s spirit is our inspiration,” his mother, Tina, said. “He takes a hit and gets up smiling. He’s not one to complain.”

Read the Frederick NewPost full story on how this brave boy and his parents are battling dystonia, one step at a time.


Winnie Nash

Winnie Nash

Winnie Nash, born and bred in Charleston, South Carolina, likes to think she’s sweet as tea. Passionate for people, stories, and a little bit of glitter, she has an especially soft spot for patients and their journeys. A writer with true disdain for clichés, Winnie catches every detail of a story—intently listening—craving the next word. Some may call it nosiness, but to her, it’s just wholesome curiosity.

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