Mattie’s Disability & Childhood

Posted on: April 23rd, 2012 by jeni No Comments


Fishing on the Outer Banks, Summer 1999 


Mattie is the youngest of four children, each of whom inherited a rare and fatal neuromuscular disease called Dysautonomic Mitochondrial Myopathy. His mother, Jeni, did not know she carried the gene. She was diagnosed as an adult, after all four of the children were born. Mattie’s siblings — Katie, Stevie, and Jamie — all died before age four. Being the youngest, Mattie lived longer as more and more was learned about the rare condition. In addition to causing muscle weakness, the condition interrupts autonomic (automatic) body systems and functions, such as breathing, heart rate, blood pressure, digestion, and the processing of oxygen. Like his siblings, Mattie needed a wheelchair, ventilator, oxygen, monitors, medicines and spent a significant amount of time living in Pediatric Intensive Care Units. When Mattie was four, his mom began using a wheelchair for mobility, and years later, she also began relying on a ventilator to support breathing.





Mattie attended his local public school through age 8, then began homeschooling due to a combination of disease progression and his ability to handle advanced academics. Mattie loved learning. By age 10, Mattie was using a high school curriculum and auditing local college courses. His favorite subjects were literature and social studies. Mattie loved reading and writing. He was rarely seen without a journal or book, and often consumed hundreds of books in a year. He enjoyed everything from children’s favorites to NY Times Bestsellers, and from factual biographies to historical fiction. Despite disability, Mattie enjoyed playing, sports, and being with friends. His favorite toys included Legos and stuffed animals. He earned a First Degree Black Belt in Hapkido, a Korean Martial Art that emphasizes respect for others and self-control.





Legos in the PICU, Spring 2003




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- Mattie J.T. Stepanek