The life of a child with Peroxisomal Biogenesis Disorder is regularly consumed with what cannot be done or what is lacking, but inside the label is a human being often with a most beautiful character, the kind that takes one’s breath away, brings tears to one’s eyes, and brings one face to face with the important realities of life.  Here are some of our favorite stories that gave us a glimpse of who our son was.

Story #1

Several years ago a good friend’s little girl was born prematurely.   Confined for weeks to the NICU, she fought valiantly  for her life.  Her older sister Sarah was pen pal to Matthew, and shared each piece of news with him as it came.  Finally the day came when the little baby had a possibility to go home…if she could maintain her body temperature.  Matthew, expressing his excitement, asked to go to the store.  In the infant section he selected a snuggly warm blanket to send to Sarah’s baby sister so she could be warm enough to go home.

Story #2

No one could forget the EF-5 tornado that hit Joplin, Missouri.  We gaped in horror when the photos flashed across the TV screen and sat stunned listening to the survival stories.  Matthew, very upset and agitated each time the drama unfolded in greater detail in front of him, finally voiced his troubled heart, “I want to help.”

“How?” I asked.

“Send money,” replied Matthew.

“All you have is the twenty dollars.  How much do you want to send?”

“$20”

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Story #3

In third grade Matthew became particularly interested in Teddy Roosevelt because as a child he had overcome his childhood illness, and Matthew searched his story to discover the secrets of his success.  In the process of conversation as we discussed all the things President Roosevelt did for his country, I asked Matthew what he would like to do for his country.  A couple of days later he provided the answer, “I want to help the children who cannot talk; I want to bring good teachers to North Carolina.”  He solicited Mrs. Laura Bush to help him, and she kindly replied with a phone call and letter. (See The White House.)

When frustrated with waiting, I encouraged Matthew each year to remember his goal and let his life story speak for itself.  As His Sophomore year ended, Matthew giggled as I read him an e-mail from the Center for Literacy and Disabilities Studies.  His greatest dream had come true!

“You have really made my day!  Thank you so much for writing and for sending the pictures.  What a handsome young man. I LOVE the pictures.  Not only does Matthew influence the world through the web site, I use a sequence of videos of him (and you!) every time I do a workshop.  I begin with the video of him writing with the intellikeys keyboard for the first time.  He made so many connections on that first day and clearly thanks Gretchen at the end.  All of that before there is any evidence that he knows any letters.  Then we show the video of the two of you doing shared reading – first with the single message, repeated line on the BigMack and then with the 8-location communication device – given more to say he can’t be stopped!  Finally, I show the video of Matthew doing making words and it blows people away to see his level of attention, problem-solving and success.  It is not unusual for the crowd to break into applause at that point.  There are thousands of children and families across the country whose lives are better because you and Matthew gave us permission to share your story.  I can’t begin to thank you enough. “

http://www.med.unc.edu/ahs/clds/resources/deaf-blind-model-classroom-resources/db-case-studies