

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