Taylor Jones

WR #9 TA #1
COMM231 - 0101
Nov. 30, 2015
A#3 Profile Mainbar
SEO: Crowleys crusade to bring her family to health
When Mrs. Donna Crowleys two daughters were diagnosed with Pompe Disease within a year
of one another, her outlook on life transformed completely. She remained strong throughout the
diagnosis and treatment processes and she continues to be a beacon of light for her family in this
difficult time.
Pennsylvania mother remains familys rock when tragedy strikes
Donna Crowley guides her family to through the diagnosis and treatment of her two daughters
who were diagnosed with Pompe Disease
A mother can mean a multitude of things to any given person. A mother can be a friend,
a backbone, a disciplinarian, a source of comfort, love and kindness, a shoulder to cry on, a
support system and so much more. These roles do not even begin to scratch the surface when it
comes to Mrs. Donna Crowley.
When tragedy strikes a family, the future is often times unknown. Some individuals let
the tragedy consume them, they assume the worst and become defeated. Some however, take the
moral high road, they keep an optimistic outlook and the perseverance to overcome the obstacles
put in their paths.
Crowley not only took the moral high road, she blazed a trail. When two of her three
children were diagnosed with Pompe Disease within a year of each other, she did not sit and
wallow, she did not dwell on the diagnoses, she, along with her husband, researched, planned and
found a team a specialists that would help their daughters live with less pain.

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Taylor Jones | A#3 Mainbar | p. 2

Before the diagnosis of the daughters, Emma and

Maddie, the Crowley family was extremely active in
their community. Emma, the oldest daughter spent a lot
of her time in her high schools music department.
Carter, the middle son, played football and focused on
working to improve his skills both on and off the field,
and Maddie, the youngest daughter was also a heavily
involved member of her middle schools music program.
Crowley, along with her husband Matt, always made it a

Donna Crowley with her daughters,

Maddie (all the way to the left) and
Emma (in the center) in Nov. 2015.

point to attend all three of their childrens events. While this kept the family with a full and busy
schedule, it was one that worked for them and one that they loved.
The Diagnosis
In May of 2009, Crowley began to notice some unusual changes in her daughter Maddie.
When she saw that her daughter started losing hair, Crowley took her to their local pediatrician
for blood work to pinpoint the issue. While the doctors could not give a specific diagnosis at the
time, they did notice elevated liver enzymes which encouraged the doctors and family to seek
further investigation at the Childrens Hospital of Philadelphia (CHOP). After several months of
tests, procedures, and blood work, the specialists at CHOP confirmed that Maddie had Juvenile
Pompe Disease, which is a rare, inherited and often times fatal disease that disables the heart and
skeletal muscles.
Shock and disbelief struck the Crowley family, mainly due to the fact that they truly were
not expecting to hear such results. Being told your child has a progressive, chronic condition
was shocking, confusing and sad, Crowley said.

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We were left with so many questions and with a feeling of guilt as we somehow gave it to our
daughters. As a precautionary measure Crowley and her husband decided to have their other
two children tested after learning it was hereditary.
The results came back along with the news that Emma, the oldest daughter also had
Pompe Disease. Devastation hit the family once more, but this time they were less shocked
Crowley said, Because the girls were so alike.
The Turning Point
After the two diagnoses so close to one another, Crowley knew the dynamic of the family
was going to change. Crowley recalled the two main issues the family faced. One, being the
fact that they still did not know what they were up against, and the second being that they needed
to make sure Carter, was not left in the dust if a majority of the family focus and energy was
going to be on the girls. We had to quickly reevaluate and focus on the uncertain future,
Crowley recalled.
Her outlook on life transformed completely, and at this point in time, she had to make a
personal decision. She could let the diagnoses of her two daughters consume her and she could
let guilt overwhelm her only to let the
responsibility fall on her husband and the rest of
the family, or she do everything in her power to
get the best medical and emotional help she could
for her daughters and family. It was not in
Crowleys nature to give up, and luckily for her
The entire Crowley family in
December 2011.

family, her unconditional love and optimistic outlook

carried her family through this tough time.

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Crowley immediately sprang into action and followed the advice from Maddie and
Emmas specialists. They began biweekly trips to CHOP (which is about an hour away from
their house), and as a few years of treatment passed, they treatment was eventually moved to the
comfort of their own home. Along with her support, Crowley also made conscious effort to
changes her familys lifestyle to make it easier on the girls. Over time, we learned more about
the benefits of diet and exercise and included them into the plan where it made sense, Crowley
said.

2009 - Maddie goed to the Childrens Hospital

Philadelphia
(CHOP).
20, 2011
Crowley
June
first
2013
MDA
Emma
Musclegraduates
Walk.
from high school.
Feb. 10,of2010
Emma was
alsoFeb.
diagnosed
with
PompeCrusade
Disease.team takes on their

May 2009 Maddie goes

Nov.
to her
18, local
2009doctor
Maddie was diagnosed with Juvenile2010
Pompe
Bi-weekly
Disease. trips toSummer
CHOP began.
2012 Crowleys go to London
Maddie
for Summer
and Emma
Olympics.
balance Pompe and their active lifestyle.

Today, Crowley shares her familys experiences whenever appropriate as a way to raise
awareness for Pompe Disease. The family even takes part in the annual Muscular Dystrophy
Association Walk in the King of Prussia area. They have a supportive team of friends and family
and they raise money that is donated to research and treatment for Pompe Disease and many
other types of muscular disorders. Due to Crowleys strength, her family is still able to remain
active members of their community, and she and her husband do everything to provide all three
of their children with the most normal and pain free life as possible.
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Taylor Jones
WR #9 TA #1
COMM231 0101
Nov. 25, 2013
A#3 Sidebar
Crowleys Crusaders take on King of Prussias MDA walk
A team made up of family and friends help the Crowleys battle Pompe Disease
On the morning of Feb. 20, 2011, the Crowley family woke up to their alarms that rang
earlier than usual. As they piled into their car, they all knew they would experience something
special that day.
The Experience
This was the first time that the Crowley family took part in the MDA Muscle Walk in the
King of Prussia Mall in King of Prussia, Pennsylvania, where they walked laps inside the mall in
order to raise money for muscular dystrophy research. The familys decision to take part in this
event was effortless. After the youngest member of the family, 9-year-old Maddie received her
diagnosis of Juvenile Pompe Disease just a few months prior, the family wanted to make every
effort they could to help the cause and other families.
The Crowleys walked alongside
their team, Crowley Crusade, and many
other teams all across the Delaware Valley,
as they worked to reach their team goal of
$3,000. That year, they were able to
exceed this goal and raise almost $5,000

Crowley Crusade Team inside the

King of Prussia Mall supporting
those who they know and love.

for the cause.

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Taylor Jones | A#3 Sidebar | p. 2

The Result

The experiences they felt there sparked a desire in Donna Crowley to have her family be
as involved as possible in every aspect of Pompe. Their involvement in the walk showed her
family that just because Pompe has an impact on their family, it does not mean that it defines
them or restricts them in any way. When asked about his MDA walk experiences, Matt Crowley,
the father of the family stated, I can guarantee that perhaps for the first time, you will leave the
mall richer than when you entered.

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