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Memorial created 05-5-2009 by
JeLan DiStefano
James Fox Vincent DiStefano
May 3 1977 - June 27 2005

This online memorial was created in loving memory of James DiStefano, whose life story is told throughout this memorial website. Please sign James's guest book and let us know you came to visit. We will remember James forever.  James was an extraordinary child.  At 60 lbs 3 years old, a 3rd grade vocabulary;  he was a real powerhouse and into mischief.  So cute with his rosy round cheeks and his big wheels you could only hug him to pieces.  James was a strong willed little man.  He overpowered his big sisters and warmed the hearts of the toughest guys.  James and his sister were hit by a drunk driver when he was three years old. James was paralyzed from the neck down, a quadriplegic, on life support, he was in an iron lung and doctors said he would never speak nor eat whole foods.  Boy were they wrong!!  The first words out of James' mouth were "I'm hungry".  He waned pepporoni.  So much for docs who were astounded by this little ones will.  Love,strength,belief goes so much further, a mothers love wow   A devistation to all.  Many years were spent traveling back and forth to the hospitals where James resided.  First Albany Medical Center where his Mom spent so much time, she painted the entire childrens ward with Sesame Street characters and Smurfs.  Next to Goldwater Hospital where we traveled a few hours daily in a real junkbox of a car.  Mom would pick me up from school and I would do my homework on the way.  Sometimes a friend would tag along.  It was so difficult to see this once larger than life child so small in a room with so many children with similar ailments.  Every visit we would notice that no one came to visit the others as if they were a burden.  Just forgotten.  Mom would bring goodies from home to these children, so much compassion in a Mother whom herself was going through so much.  James became close with a sweet little girl named Mika and a boy named Kevin.  Never did we witness visitors for these children.  One day we visited James and both beds were empty.  It was then that Mom decided that she wasnt going to wait for some miracle to happen.  She realized that no matter what James' condition was at this time he belonged at home with his family no matter what it would take.  So the fight began...  A long journey and test of strength for our family.  A single mother of five decided the only choice she had was to fight with all her being which was only love at this point and take her little boy home. 

 

.  There is so much more to our story, please look back soon.

 

 

The Journey begins...So we took James home in a foldable wheelchair with a tray at  the bottom to hold his venthilator.  It was so heavy. I held him up for a long drive as he sat like a rag doll in the seat of the car.  We pulled up to our house which was an apartment with three small bedrooms.  James' was set up cozy for him.  All his medical supplies were hidden discretely in a very organized closet.  Mom had a hospital table that went up and down and a small tv for him to watch. We didnt have much but never realized it because Mom was so creative. 

Our neighbors were kids our age which must have been hard on mom.  Seeing them grow and play like James should be.  She was so strong.  Summer was gone and the school year was beginning.  Her boy was smart as a whip and deserved to go to school.  Oh no officials said.  Mom fought tooth and nail and finally James was given the ok to attend public school with the other children.  We came from a small town; Cairo,NY and this was a big deal. But how would he get there?  We didnt have the money for a van or lift and their were no public services. 

A kind and generous man whose name was Vinny stepped into our lives for a brief period when we needed him most.  He started up the James Fund with raffles and everything.  My girlfriend and I would sit in front of the local grocery store selling raffles for the big event which ultimately resulted in a new van with a lift for my brother.  On the night of the raffle where all Vinnys hard work would pay off, he suffered a heart attack and passed away.  He  was my moms anchor for a while and a figure of strength and hope for us.  Well we got the van, James was able to attend school, mom still did everything she could to keep us going and Vinny, our Angel will never be forgotten.  Its funny how people come and go in and out of our lives.  We never understand why they leave but I really dont think we are supposed to stick around forever.  WE are all stepping stones to someone elses journey as they are ours.

Mom attended each and every day of school with James up until about the end of high school.  He occassionally had a nurse or I went with him.  James earned high honor roll and was an inspiration to everyone.  Mom made sure the kids were comfortable with James and explained everything they might be wondering.  She would have them sit comletely still or sit on their hands and get them to imagine doing everyday things without being able to move.  Or holding your breath and not being able to sneeeze or blow your nose and not scratching an itch.  James was given every opportunity by Mom to do whatever it was that he urged.  if he was able to do it on his own he would she figured so she helped him to accomlish it all.

 

Playing with your nephews

James accomplished so much and did it with enhusiasm.  He started his own DJ company, did some internet marketing, a little photography business, learned German, Spanish and some Mandarin(just because) and played guitar and vocals in his own band.  He graduated High School with high honors and  made friends easily.  James had his own style and changed it often.  He loved music and adored food.  Christmas was his favorite time of year.  Helping Mom create recipes and tasting everything!  He was such a joy it just saddens me that nothing feels the same without him here.  As complicated as it all was, James enjoyed the simple joys in life that we all take for granted.  I credit him for my stature today.  Not a day goes by that I can not credit him for.  I am so much of me because of him.

 

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