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From the Desk
of Kristen Malfara
Robert and I began The M.O.R.G.A.N. Project in 2001,
incorporating and applying for our 501(c)(3) without any
assistance. Since that time, we have had other parent/caregiver
members join us as volunteers, but the lion’s share of the work has
been done by just the 2 of us. Over the years our goals for this
organization have gradually changed, based solely on our own
experiences over the past 10+ years of caring for our son, Morgan,
who was diagnosed with an extremely rare neuromuscular disorder
called Leukodystrophy at just 8 months old.
Our original vision has not changed; it has just
evolved to accommodate the additional needs and obstacles we have
faced as our son has gone from an infant to a grade-schooler.
As time has gone on, we have come to realize that we are not
super-parents, and cannot do this without the assistance of
dedicated volunteers willing to share their own experiences, talents
and time with us as advisors, committee members and fundraisers.
We rely on like-minded business, corporate and philanthropic
organizations that are willing to make sizeable grants to our
grass-roots organization in order to continue to provide the support
programs that we have in place, as well as funding the future
visions of The M.O.R.G.A.N. Project. Every step we have taken for
The M.O.R.G.A.N. Project has meant time away from other areas of our
life that need our attention … namely our children, and ourselves.
We are the target group outlined in our mission statement! As much
as we would like to move mountains, we have learned that we are only
capable of moving one little ant hill at a time, so we try to devote
ourselves to the big picture, but concentrate on completing the
small things to the best of our abilities while juggling the rest of
our life commitments.
Shortly after Morgan was diagnosed, we were
devastated to learn his prognosis. It was not until 10 long months
after this rare diagnosis when we accidentally stumbled upon a
support group based in Indianapolis that changed our lives so
dramatically. We learned that the only experts regarding our son’s
issues were ourselves … no one knows your child like you do, and our
number 1 priority was to be his advocate. Through this wonderful
support group we learned so much, and credit that group of parents
with making the biggest difference in our lives! The doctors rely
on medical data and text books that have information based on
studies that are sometimes decades old, and often times are no
longer reliable sources of information. Every little thing that we
have learned on our journey as Morgan’s caretakers has come from
another parent that has “already been there, done that” and we are
better parents/caregivers/advocates as a result. We have learned
from experience that this can make all the difference in the world
to other parents who follow in our footsteps, and through The
M.O.R.G.A.N. Project we hope to help light the way.
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