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

 
The foundation will be holding
its 1st annual “Miles for Meg 5K
and 1 mile fun run” in the fall
of this year.

We are in need of sponsors to


help cover the cost of this event.
Please contact Kate Lepley for 
information on how to become a

sponsor :

Katelepley@hotmail.com

There are multiple levels of


sponsorship, and ways to pro-
mote your business. E-mail Kate
today for your sponsorship The Miracle for Megan
packet. Foundation was created to raise
awareness, increase research,
and develop optimal treatment
methods for people with Genetic
Disorders. We envision the
ability to detect Genetic
Disorders early and to help to
provide exceptional care to the
patients with these disorders,
and their families

Our goal is to have 300 runners


in our first year!

The Miracle for Megan Foundation Helping Fund a Cure


8732 Cimarron Circle
Parkville, MD. 21234
Phone: 443-388-2145 www.miracle-for-megan.com
E-mail: Amie@miracle-for-megan.com
E-mail: Nick@miracle-for-megan.com
Meg’s Story and what we consider to be a minor educa-
tion in genetics, we finally had some insight
into our little angel’s world.

With this micro-deletion there are four


symptoms: severe developmental delay, in-
tellectual disability, epilepsy, and neuropsy-
chiatric problems. Megan has three of the
four symptoms, and the fourth may still be
to come. We are unaware as of now if she
will develop neuropsychiatric problems, but
Megan was born on May 29, the majority of the other people who suffer Meg, but thousands of other chil-
2008. She was at a healthy weight from this same deletion have developed this dren just like her.
of 6 pounds 15 ounces, and eve- symptom. This micro -deletion is not life
rything seemed great in the be- threatening in any way. There is NO cure Megan recently had surgery for a
ginning. At 5 months old and not and very little treatment available. G-Tube. This is to help her gain
reaching her milestones, we knew weight and get the proper nutri-
that something was wrong. She At 20 months of age she is only able to sit tion she needs for proper devel-
was first diagnosed with Hypoto- for a short amount of time. Eating has be- opment. Megan is the joy of our
nia and Global Developmental come a real challenge. Every day brings a lives and we are very lucky to
Delay. Since January ‘09 she has new surprise. The doctors are trying vigor- have her. Her little smile would
been in therapy at Kennedy ously to control her seizures, and have dedi- melt your heart!
Krieger Institute once a week and cated more than just their work hours to
receives more therapy at home. help Megan. Their efforts and dedication
She had seen numerous doctors have inspired our family to start something
trying to find the cause of her wonderful, The Miracle for Megan Founda-
hypotonia. tion. Our vision is to help fund the research
needed to find better treatment methods for
After more than 20 special tests genetic disorders The Miracle for Megan
Foundation
The research facility at Kennedy
used a new SNP-array test that With the funds raised from family and
showed an interstitial deletion at friends we have helped one of Meg’s doc-
15q13.3. with a loss of her tor’s hire a research student from Ecuador, 8732 Cimarron Circle
who will specialize in research on Meg’s Baltimore MD. 21234
CHRNA7 gene. That’s it! No
name, just a mouthful of numbers specific Deletion. With a little help from all Phone: 443-388-2145
E-mail: Amie@miracle-for-megan.com
that can sound scary to young of you we can do so much more for not only E-mail: Nick@miracle-for-megan.com

parents. After genetic counseling,