 On
April 1, 2006 life ceased to exist
the way my family knew it. My oldest
child and only daughter, Maria, was
diagnosed with a diffuse
intrinsic pontine glioma
(DIPG). DIPG is an inoperable incurable
brain tumor that strikes children
usually between the ages of 5 and
11. A child with this diagnosis is
given a 10 to 12 month life expectancy.
With the devastating diagnosis of
our Maria came a great deal of sorrow
and pain as well as desperation. My
husband, Ed, and I frantically searched
medical journals, books, articles
and the Internet for anything—any
sign of hope that we could cling to
that might possibly save our daughter’s
life. Instead, we were surprised to
find very little research and few
experimental trials. That which we
did find was difficult to decipher
from a layman’s perspective
and, of course, each case study ended
in the death of a child.
What we uncovered was that childhood
glioma (brain tumor) research was
grossly underfunded, and there was
no organization acting as a clearinghouse
or translator of the state of research
for newly diagnosed families. There
is simply not enough being done to
find a cure and the public remains
unaware of the magnitude of this disease.
The cure rate for most brain tumors
is significantly lower than that for
many other types of cancer. The
Glioma family of tumors account for
almost 45% of all tumors. They are
the second highest cause of cancer
deaths among young people. 85-95%
of children who are diagnosed with
a high grade glioma die within five
years. This is unacceptable.
As a result, we have started the Prayers
from Maria Children's Glioma Cancer
Foundation
that is charged with funding research
into a cure for childhood gliomas,
and to advocate for families with
such conditions. Initially, it is
our goal to gather enough funding
to provide grants to research institutions
that can demonstrate how they plan
to best use the money to find a cure
for this child-killing disease. Eight
of the very best doctors and biomedical
researchers in this area have agreed
to be on the foundation’s advisory
board. Based on their knowledge and
the research that the foundation will
fund, we plan to create a destination
for newly diagnosed parents to access
the most up-to-date information regarding
glioma research and options for treatment.
Eventually, it is our goal to offer
financial assistance to parents without
the means to get the best treatment
available for their child.
From
all that I have seen since our daughter’s
diagnosis, I know we can make a
difference. Together we can help
find a cure and give hope to afflicted
families.
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If you are interested in volunteering,
making a donation or finding
out more please contact
us. Thank you for
your prayers and support.
Sincerely,
Megan
McNamara
President, Prayers from Maria
Foundation
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The McNamara family (2006)
(Ed, Megan, Maria, Eddie, Aidan
and Blake)* |
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