When little Matthew was born and diagnosed with Peroxisomal Biogenesis Disorder (Zellweger’s Syndrome) we asked our son Adam (having a mild form of Zellweger’s, Infantile Refsum’s) to give us advice about raising his new brother. Within a quick moment Adam replied, “Do not be sad for the disabilities, for us they are normal.  We have a life to live.”  It is easy to give way to profound grief, even so much so that the children perceive they are the cause of a parent’s sadness.  I could never forget Adam’s words.  They became the motivation to write, with the help of God, a different story for Matthew. In meditating on and remembering that the only disability our children know is to be alone, to have no value in being alive, and if true success is helping another reach to a place he could not attain by himself, then we as parents have the prime opportunity—the gift—to become extraordinary.

  

Advice for Professionals

January 2013 Matthew, age fifteen, delivered a message of advice to the focus group on rare disease research conducted by Harvard Medical School and Brigham and Women’s Hospital in Boston through a contract from the US government’s Agency for Healthcare Research and Quality (AHRQ), stating, “Search out what is not working, and seek to support it.  Keep it simple. And please hurry!” Young Matthew, full of insights, has also offered doctors his advice to “Please, read my medical history.”