Read a story
Stephanie Snyder
My 7 year old son has just been diagnosed with EPP. Over the last
4 years we have seen numerous doctors,
with
whom all have said ;maybe he is allergic to this, or maybe he's
allergic to
that;
until finally this
summer he had the worst outbreak that finally led us
to a
doctor who was
familar with porphyria.
She ordered the testing and sure
enough it came back positive. How releived, yet terrifying. We
finally had a
name for this, but
how heart breaking for our son. How do you explain to
a 7
year old that he
cannot do alot of the things that he soo passionately
loves
to do? That was
my first question...the first of many.
Our son is so
full of life and
ambition. It all seemed so unfair. Our son seems to be
dealing with
everything alot better than we had expected. He has his
days,
but for the
most part is coping well. He certainly gives me alot of
strength
and hope.
We are eager to learn more about this condition and meet
other people that
may have some advise. We just have to have faith and beleive
that
someday
there will be a cure for this condition. In the mean time, we
will
remain
strong and supportive for our son.
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