Super Hero Matthew
Team Member: Jlin Nucci
Brian and Tina Merryman wrote -
Six Year Old Super Hero Needs Your Help To Fight Super Villain, Dystonia
Maryland-based first-grader, Matthew Merryman, is a real life super hero. Only, instead of fighting crime, he has spent most of his life fighting disease!
Matthew was diagnosed with a rare form of brain cancer and Hydrocephalus (swelling of cerebral spinal fluid) in 2009, when he was one year old. At that time, this tumor called a Papillary Tumor of the pineal gland, was never seen in anyone under the age of five throughout the entire world.
Matthew has undergone nine brain surgeries, including three very invasive procedures causing Traumatic Brain Injury. He endured three out of six anticipated cycles of high-dose chemotherapy cocktails. He developed Liver Disease from the chemo, and proceeding became a dangerous option. That is when Matthew first traveled to Florida. Most kids travel to Florida for their first time to experience the magic of Disney World. Matthew went to experience the magic of survival.
The magic came through doctors, nurses, friends old & new, and family, but mostly it came through God. The most unexpected and inspiring magic came through the strength and optimism of Matthew’s fight and spirit. He has touched and lifted lives all over the world. He truly is a gift from God, as his name is defined.
At the University of Florida Proton Therapy Center, Matthew received 31 consecutive treatments of Proton Beam Radiation Therapy. His cancer, which is deep in the center of his brain, has been stable ever since!
However, Matthew’s journey before, during, and after his radiation, has been incredibly challenging and there is not enough time and megabytes, nor memory left in his parents, to cover it all. The number of secondary ailments and both cognitive & physical delays caused by his cancer and its treatments is sadly impressive.
Matthew is a thriving, special needs student in Frederick County Public Schools. The staff and support there is overwhelming, and Matthew would not be blossoming the way he is without them/it.
However, Matthew is experiencing worsening symptoms of a movement disorder called Dystonia. Initially, it was assumed that this disorder developed secondary to his treatments. After a recent evaluation, it appears that Matthew’s Dystonia is actually a Primary condition, which would mean that he was genetically pre-disposed to it. They don’t call our Super-Hero “Matthew the Medical Mystery” for nothing!
Dystonia is a disorder which presently has no cure. It causes certain muscles to involuntarily contract, twist and contort. It is very hard to witness, and his parents expressed that they can not imagine the pain, discomfort and frustration it causes, never mind the energy it takes to endure. There is research being facilitated; however, funding is very limited at this time.
This summer, Matthew will be traveling to Florida with his mommy, daddy, little brother and sister, 14 year old dog, and his Nana. He has been identified as a candidate for a surgery called Deep Brain Stimulation (DBS). His neurosurgeon at the UF Health Shands Hospital and the UF Health Center for Movement Disorders & Neurorestoration, Dr. Michael Okun, will be implanting leads into a certain area of Matthew’s brain, and on both sides. This is a long surgery of precision and many risks are possible. One month later, a computer (control system) will be placed in both sides of Matthew’s chest. To these, the leads will connect and electrical impulses will be sent to shock certain parts of Matthew’s brain (namely messaging and circuit systems). The hope is for these leads to re-spark the connections that Dystonia causes to be interrupted.
The surgery has a lot of risks, and the follow-ups between having to adjust the computer settings and evaluate side effects are intensive as well. The Merryman family will be temporarily relocating to Gainsville, FL for eight weeks during the summer of 2015. This experience will most likely give Matthew some relief from this painful and rehabilitating disorder, and there is a chance that Matthew could one day walk again.
For six months following the final procedure, Matthew will need to travel down to Florida once a month for crucial follow-up appointments in order to adjust the computer, evaluate the DBS systems, as well as any possible side effects, and its hopeful effectiveness.
Matthew and his family need your help. With Matthew’s needs, and two young siblings, they remain a one-income family. This endeavor will be an incredible expense, and Matthew’s Super-Dad will have to be out of work during this time. Super-Dad has been evaluating and planning and strategizing for the most effective, safe, and cost effective ways to make this a reality, including spending the duration of the trip in their RV (may God help them)!
Despite great planning and cost-cutting solutions, Matthew and his family need your help in order to sustain their mission to fight the evil Super-Villain, Dystonia.