Dear FML-
 
I generally write happy things, or silly ones.  Not so today.  My
family's dear friend Trevor died today, he was only 27.  He spent most of
his life knowing that he would die from Duchene's Muscular Dystrophy, a
pitiless killer that he and his older brother Alan, also deceased in his
twenties, inherited from their mother.
 
Pretty much the day that Trevor's father learned of the diagnosis, he
left Trevor's Mom and the kids, leaving her to cope alone as the single
mother of two terminally ill children.  He remarried, and started a
new, healthy family.  Sometimes I think about how that makes me feel,
sometimes I just sort of overload and put those thoughts away on a shelf
in my mind for a while.  I know that Trevor did.  He had to use that
shelf a lot.
 
Trevor wanted us to enjoy him while we had him, and not to be sad when
he passed, as he knew he would, years before his time.  Tragedy made him
wise, and wisdom made him compassionate toward those who cared for him,
who knew that his life was like a single glass of the finest wine to be
savored slowly, with friends.
 
I know that money is tight, but would you please consider donating a
little something to the MDA, the muscular dystrophy association, the next
time you see one of their fundraisers on T.V.?  The money that Jerry
Lewis raises every year really does go to the children, as the disease
takes it's toll, and they first lose the joy of running, then walking..
they lose control of their arms and hands, and the medical bills
associated with these losses are ruinous.  The MDA helps out with them,
and also provides emotional support to the families and the children, as
they become wheelchair bound, and in the case of Duchennes, inevitably
pass away, generally from pneumonia or heart failure in their late teens
or early twenties.  Trevor beat the odds for a long time, but the house
always wins with Duchenne's, as it does for all of us some time.  That
time is just comes so very soon for people like Trevor.
 
He didn't just sit around and live off of the government and feel sorry
for himself.  He went to school, a good school, and he worked.  He earned
more than I did from his computer at home!
 
Somewhere, in a beautiful green field, I like to think that Trevor is
running now, faster and faster just for the sheer joy of it, his shoes
falling away from his feet and his toes sinking into the rich, early
summer's grass, fists pumping, lungs filling full with the sweetest
air...laughing with a voice stronger and clearer than those of us who
knew him can ever remember, his true voice, at last.
 
Thank you for listening.
Alexandra in Massachusetts
[Posted in FML issue 4181]