Matthew's Story

...We make a Great Team!

My mom encouraged me to do many things like: playing soccer, baseball, roller skating, sledding, horseback riding, bowling, etc. because she knew I would eventually get weaker. Her goal was to have me experience everything I could while I had the strength.

Overtime, I lost the ability to do many things I had done previously. My mom eased my fears by telling me that we would find a way to do those things differently. Being involved in activities that I previously enjoyed and having the support and devotion of my family, has given me reason to forge on.

My mom inspired me to develop "Matthew's MIGHTY Mission" to help others with disabling conditions explore adapted toys, innovative technology and modified activities. My hope is that by empowering others with meaningful activities, they will be able to live life to its fullest, unconditionally, and barrier-free.

Thank you in-advance and remember to live life to its fullest. All Day, Everyday.

As told by mother, Mary Nagy

Our Story: About Us

Our Journey

My name is Mary Nagy,

Certified Recreational Therapist and more importantly, the mother of Matthew Nagy

It has been an honor to be the mother of this child who happens to have special needs. A challenge and commitment full of many highs and lows but, we have embraced it. I truly believe these precious children leave a legacy of educating everyone whom they encounter to become better people. My son has taught us patience, to love unconditionally, to see humor in the most challenging situations, humility, compassion, empathy and much more. I stand in awe of Matthew's strength and determination to overcome unsurmountable odds to simply live.

Prior to Matthew's birth, I worked in rehab facilities, psychiatric hospitals, geriatrics, spinal cord injury units, and with many other individuals with disabilities. My husband (Don) has experience in health care administration and HR. Our career choices certainly offered us a unique perspective in this journey. In fact, Matthew inspired me to start a private Recreational Therapy business to assist other children with special needs by introducing them to the therapeutic value of engaging in meaningful activities.

Much of his first year was spent searching for doctors that could help define his ever-changing condition. He was having difficulty advancing with textured foods (began vomiting), had fluctuating muscle tone (stiff/floppy), appeared to be having seizures (staring, drooling) and lacked the ability to sleep.

We went through 5 pediatricians and countless specialists that year, receiving 5 different diagnosis. I was fortunate enough to find a wonderful physician (Dr. Michael Nigro, Pediatric Neurologist, now retired). He preformed a muscle/nerve biopsy on Matthew at just 15 months old and we finally had a name for his condition: Metabolic Myopathy/Cytopathy at the Mitochondrial level. This was the first of many, many medical procedures and life-threatening illnesses. We felt immediate relief & gratitude. They finally validated my concerns/fears and we were eager to seek the treatment he so desperately needed.

When asked about what to watch for as the disorder progressed, the doctor's response was simple; "I know you. You will not miss a thing. Best advice I can give you is to enjoy him and try not to worry." Good advice, but I did my research and still worried. However, this new found information empowered & prepared me to advocate for the treatment needed to sustain him.

Today, Matthew has outlived his life expectancy for this disease. My belief is that experiencing all that life has to offer and having the love and support of his family, has given Matthew a reason to forge on when it would have been easier to give up. For this reason, I would like to see other adults and children with disabilities experience all that life has to offer, unconditionally and barrier-free.

Learn More About: Metabolic Myopathy/Cytopathy

At the Mitochondrial Level

Metabolic Myopathy is caused by a gene mutation affecting a person's metabolism (the process cells use to convert fuel into energy). Our muscle cells depend on this process to contract and function properly. A big player in the metabolism process is ATP (adenosine triphosphate). Metabolic Myopathy occurs when one of the enzymes needed to create ATP is missing. The result is the muscles cannot convert sugar into ATP (or fuel/energy) and cease to function properly.

Metabolic Myopathy at the Mitochondrial Level: the specific enzyme missing determines the type of metabolic myopathy. For Matthew, his condition of Mitochondrial Metabolic Myopathy means that an enzyme is missing from the mitochondria (the energy producing part of the cell).

What Does All This Look Like? Issues with the musculoskeletal system causing someone to become very tired, very quickly. Other major symptoms include muscle weakness as well as a painful breakdown of muscle tissue often causing exercise intolerance, kidney damage, difficulty breathing, illness & stress. Activity can quickly cause fatigue, pain or muscle cramps.

To increase quality of life, diet changes, physical, occupational, speech and recreational therapy may be recommended.