"As many of you have heard, our family went through a horrifying experience
early on in the life of our beautiful daughter, Bailey.
Within days of her birth, Bailey tested “positive” for a metabolic disorder
known as “G-A 1”. For the first ten weeks of her life,
we lived a nightmare founded in overwhelming love that we felt for this gorgeous
little Angel who had graced our life,
combined with a level of fear, grief, and pain that we had never before
experienced in our lives.
As it turned out, our prayer for a miracle was answered as Bailey’s final round
of tests came back showing that the first tests
had been ‘false positives’. Our little Angel was healthy, we were beyond lucky
and more than grateful for the prospect of
a healthy future together as a family.
As we went through our journey that very long 10 weeks, we discovered that other
people are not so blessed. When Bailey was given the all-clear after our
initial feelings of joy, we realized clearly that we must not forget those whose
miracles were not granted - and that we were obligated by our blessings to try
to help others whose lives are being deeply affected by this family of illnesses.
We realized as well that the living hell we had endured during that short period
of time is nothing compared to the families that actually have
children with some type of metabolic disorder and the difficulties they
face with every day that passes.
Within these realizations, came the birth of
Our mission is trifold:
To immediately and effectively heighten awareness on the
importance of expanded newborn screening and its availability and
necessity for every newborn. Through this testing, when a child is
diagnosed with a disorder, steps can be taken immediately to mitigate
the problems that go along with these diseases;
To create, promote and facilitate legislation which will mandate this expanded
newborn screening for all fifty states; and
To raise funds through promotional activities and sales to
support children and families affected with GA1 and other OA’s
(organic acidemia metabolic disorders) through the creation of
provisional support programs, including food, vitamin and emotional
support efforts. With the costs of all these important areas of treatment so
exorbitant, it is imperative that insurance companies supply these families
with supplements and support they need to live relatively normal lives.
A big challenge, and a large task, yes. But with your help, as we work together
to accomplish these goals, many lives will be changed and our reward will be in
seeing those changes, and knowing that we took one of the most horrifying
experiences of our life, and used it to make their lives and experiences much
more joyful.
That is our hope and vision. We invite you to join us.”
To immediately and effectively heighten awareness
on the importance of expanded newborn screening
and its availability and necessity for every newborn.
To create, promote and facilitate legislation
which will mandate expanded newborn screening
for all fifty states.
To raise funds through promotional activities and sales
to support children and families affected with GA1
and other OA’s (organic acidemia metabolic disorders) through the creation of
provisional support programs
(including food, vitamin and emotional support efforts.)
