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BRETT’S STORY: A PERFECT MATCH
I AM LIVINGPROOF.
FALL 2014
T A B L E O F
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Phoenix Children’s Hospital Foundation Board Members
Chairman Immediate Past Chairman – Larry Clemmensen, Community VolunteerBoard SecretaryPCH President and CEOPCH Senior Vice President, Chief Development Officer
Taylor Burke, Rainy Partners
Jeffry King, Pete King Construction
Jonathan Pinkus, Arizona Nutritional SupplementsDavid Ralston, Bank of ArizonaScott Rehorn, RED Development, LLCChris Stamets, Western Retail AdvisorsDavid Watson, Revolution Tea
EditorialSenior Vice President and Chief Development Officer Director of Communications, Foundation – Cheriese ChambersEditor – Laura JobkePhotography – Elaine Kessler Photography & Tim Lanterman Photography Photography; Event Photos – Ben Arnold Photography Design – ArtelyaPrinting – OneTouchPoint - CCI
If you no longer wish to receive copies of Hopes and Dreams please call (602) 933-4483
STEVE SCHNALL LETTER
DID YOU KNOW these interesting facts about
Phoenix Children’s?
JOURNEY TO SURVIVAL After sustaining a severe
injury while on vacation in Mexico, Phoenix Children’s was
Alexis’ last hope
DOC TALK Dr. Nazneen Aziz shares her passion for
science, family and travel
A NEW ERA OF MEDICINE How genomics will change
the course of treatment for our cancer patients
A PERFECT MATCH Brett’s donor heart is more than just
a biological fit
BEST BUDDIES The story of two patients who have bonded
over shared experiences
A NEW BEGINNING Why one family’s trek from
Afghanistan to Phoenix was life-changing – and lifesaving
YOUR DONATIONS MATTER Stories demonstrating the
impact of your donations
EVENT WRAP UPS
CALENDAR OF UPCOMING EVENTS
346
810
1816
202434
1
2C O N T E N T S
STEVE SCHNALL
Dear Friends,
Within the next five years, one in four Arizona children will have received care from a Phoenix Children’s provider. That’s thousands of kids who will be cared for or treated at our hospital; many whose lives will be saved here. In this issue of Hopes and Dreams we introduce you to some of those patients who are “living proof ” that your donations matter.
We know how critical it is to meet the complex and ever-changing needs of our patients. That’s why we offer the most comprehensive pediatric care services in the Southwest region and are proud to have been named to the U.S. News and World Report Best Children’s Hospitals again this year.
But being fiscally responsible is equally important. That’s why our operating costs are among the very lowest when compared to the best children’s hospitals across the nation. Additionally, our fundraising costs are nearly half the national average.
What does this represent to our donors? That your generosity is helping fuel a financially smart and high quality children’s hospital. That your gifts are used wisely. And that your donations make a difference by impacting our ability to recruit the best physicians, purchase innovative equipment and technology, and conduct leading edge research that saves lives.
Yes, your donations do matter, and every gift made has the power
to change a life.
Sincerely,
Steve Schnall, Senior Vice President & Chief Development Officer
2
137,358 unique patients treated in 2013
$1.6 million to operate the Hospital daily
1 in 4 children in Arizona will have received care from a Phoenix Children’s provider within a five year period
13 cents to 1 dollar among the lowest cost-to-raise-a-dollar ratios in the non-profit industry
16% below the national average for operating costs
1 of 13 children’s hospitals in the country to be named a Top Children’s Hospital for patient safety and quality by The Leapfrog Group
We treat 60% of Arizona’s pediatric cardiac, orthopaedic, neurology and oncology cases
45% of the state’s total pediatric trauma cases are treated at PCH
Recognized by U.S. News & World Report for excellence in pediatric care 4 years in a row
75 subspecialty fields of pediatric medicine are offered at Phoenix Children’s
40th largest employer in the state
$42 million donated to the Foundation in 2013
60+ programs funded significantly through philanthropy
13 cents to 1 dollaramong the lowest cost-to-raise-a-dollar ratios in the non-profit industry
16%below the naverage foroperating co
40th largest empin the state
PCH at a Glance
3
ALEXIS
I AM LIVING PROOF.
THE NEED
4
JOURNEY TO SURVIVAL When children are severely injured, the state’s only Level 1 Pediatric Trauma Center is best-equipped to care for them.
“Two hospitals told me that my son wasn’t going to make it,” Cecilia says.
“Phoenix Children’s was his last hope.”
Her son Alexis was in grave condition. They had been on a family
vacation in Sonora, Mexico visiting family. But the celebration quickly
turned into a nightmare when 5-year-old Alexis was severely bitten by
a large dog.
“He had gone outside to play before breakfast,” Cecilia recalls. “Suddenly
we heard a cry and he was being carried into the house.”
His family rushed Alexis to the local hospital, but doctors couldn’t
stabilize him. He had suffered severe, penetrating neck and head injuries.
He was in respiratory distress and losing blood fast. Doctors inserted a
breathing tube, but Alexis would need to travel 40 minutes by ambulance
to a hospital in Yuma for additional treatment.
When they arrived doctors told the family that his injuries were so severe
that he would need to be transferred to Phoenix Children’s Hospital.
Alexis’ last hope lied with the state’s only Level 1 Pediatric Trauma Center.
But that meant traveling another 180 miles from Yuma to Phoenix. As the
miles added up, the wait was agonizing for his parents. “I was scared, but
all I could do was hope and pray that he would pull through,” Cecilia says.
Alexis was airlifted to the Hospital. Doctors knew his body wasn’t getting
enough oxygen. To determine why, they had to open his neck in the
trauma room. That’s when they discovered that the bites had severed
his trachea.
“With a transected trachea, his survival was miraculous,” says Dr. David
Notrica, trauma medical director. “Upon arrival, the trauma surgeon was
able to establish an airway by directing the breathing tube into his lower
respiratory tract.”
In addition to his tracheal injury, he had suffered cervical nerve damage
and severe lacerations. Now aware of the critical extent of his injuries, the
trauma team operated on Alexis for several hours, reconstructing his arm
and face, stabilizing his neck, and inserting tubes to help him breathe.
As the weeks passed, Alexis underwent dozens of procedures, spending
nearly a month at Phoenix Children’s. With time he no longer required
the feeding tube and hopes to have his tracheostomy removed soon.
Now 6, Alexis enjoys playing with Legos, swimming, eating his favorite
foods and chasing his brothers – normal activities for many children, but
remarkable given all he has endured over the last nine months.
“He finally landed in the right hands,” Cecilia says. “If it weren’t for
Phoenix Children’s, I don’t believe my son would be here today.”
Nearly 2,500 patients like Alexis were treated in our Trauma Center last year, with 80,000 total treated in our Emergency Department in a space designed to accommodate just 22,000 annually. The Need is Now to build a new Emergency Department and Level 1 Trauma Center. You can help at TheNeedisNowPCH.com
I S NOW
5
Welcome to Phoenix Children’s! How are you enjoying your first summer in the desert?
Since I lived in Boston for many years, the month of
June was quite a shock! But it’s a dry heat, right?
What brought you here?
I see great potential for pediatric research at Phoenix
Children’s that hasn’t been done elsewhere. I share the
vision of the hospital’s leadership, focusing on genomics
and DNA sequencing, a new field for all of medicine.
When it comes to children, how does research differ from adults?
In terms of the approach and technology, it’s essentially
the same. But I feel a greater satisfaction from pediatric
research. A child’s life can be devastated by a disease,
and if research can lead to improving their lives – saving
their lives – I think there’s a greater impact.
Have you always wanted to be a researcher?
Yes. Biology fascinated me from a very early age.
Why?
It’s partly the curiosity factor, combined with the thrill of
new findings. But it’s also knowing that my contribution
in research has some significance in medicine.
How do your patients inspire you?
There’s an aspect of risk involved in research and clinical
trials, not knowing what the outcome will be. They are
willing to take a chance because they want to advance
science and help others. It’s very humbling that they
have that much compassion for other patients.
What do you like to do outside of the lab?
I enjoy baking. And I love to read, especially
biographies. I recently finished Steve Jobs’ biography.
Reading about people who are talented and creative
fascinates me.
Where did you grow up?
Bangladesh. I came to the United States as a teenager
to attend college. Then I never left Massachusetts –
until now!
A F O R M E R A S S I S TA N T PROFESSOR
AT HARVARD M E D I C A L S C H O O L ,
D R . NAZNEEN AZIZ BROUGHT HER
WEALTH OF GENOMICS R E S E A R C H
EXPERIENCE – INCLUDING STINTS AT
PHARMACEUTICAL AND BIOTECH FIRMS
– TO PHOENIX CHILDREN’S. OUR NEW
SENIOR VICE PRESIDENT OF RESEARCH
AND CHIEF RESEARCH OFFICER SAT DOWN
TO EXPLAIN WHY SHE’S EXCITED ABOUT
THE FUTURE OF RESEARCH AT PHOENIX
CHILDREN’S – AND HOW SHE FINDS
INSPIRATION INSIDE AND OUTSIDE OF
THE LAB.
DOC
Exploring a cave in Cappadocia, Turkey
6
TA L K
What has it been like to live in two very different countries?
It gives me the advantage of taking the best from both
countries and cultures.
Tell me about your family.
My husband, Arijit Bose, is a professor of chemical
engineering at the University of Rhode Island. We have
two daughters; Rahela is a third year medical student in
Massachusetts, and Razina just graduated from college
and is working at Massachusetts General Hospital. We’re
a sciency family!
What makes you laugh?
Sitting by the fireplace with my family, sharing our
childhood stories.
Do you enjoy traveling?
I love to travel. I enjoy experiencing the diversity in
cultures – but also observing many similarities. I’m
lucky to have traveled with my family to many parts of
the world – China, Japan, India, most of Europe, and
northern Africa.
What are you most proud of?
My daughters. They have turned out to be wonderful
adults with promising careers.
What are you most excited about in your new position?
The potential of finding new treatments for children
with cancer. There’s a great opportunity before us to save
young lives.
Dr. Aziz received a PhD in
molecular biology at Massachusetts
Institute of Technology. She
attained her MS in biochemistry
at the Massachusetts Institute
of Technology and BA from
Wellesley College. She has
published extensively in medical
and scientific literature and
speaks at numerous national and
international conferences.
7
With Rahela, Arijit and Razina in Istanbul, Turkey
Visiting the Great Wall of China with Arijit
DR. NAZNEEN AZIZ, PHD
Imagine seeing a doctor and finding out that your child is genetically predisposed to
a condition like heart disease, hypertension, Alzheimer’s and diabetes. What if you
could then take measures to prevent the onset of disease? Seem far-fetched? Using
genomics and DNA sequencing, this type of preventative health care will be possible
at Phoenix Children’s within the next few years.
At the Ronald A. Matricaria Institute of Molecular Medicine at Phoenix Children’s
Hospital, researchers are working to change the course of pediatric medicine. While
preventing complex genetic diseases is still a few years away, the Institute is in the
planning and preparation stages for its first clinical trials for pediatric cancer patients,
using genetic sequencing to diagnose and determine how to best treat each child.
“There are a lot of adult medications that are FDA approved, but they have not been
designed for children,” says senior vice president of research and chief research officer
Dr. Nazneen Aziz. “If we sequence the genome of a child with cancer and find the
genetic mutations causing their disease, we have the option of enrolling the child in a
clinical trial for a drug approved for adult cancers or new investigational drugs.
This line of research will allow us to develop new treatments for pediatric cancers.”
Focusing on cancer now, the Institute will eventually concentrate on various
diseases, like cystic fibrosis, neuromuscular diseases, autism, Type 1 diabetes and
many more.
“Many diseases that children inherit are ‘mystery’ diseases. We spend a lot of money
trying to identify the cause and the family has to suffer a lot of emotional angst as
they endure a diagnostic odyssey to determine the origin,” says Dr. Aziz. “But if we
can run a genome sequence test, we may be able to identify the causative mutation
within a shorter time frame.”
There are two end goals in genomic medicine; identifying the genetic mutation for
a quicker diagnosis, and determining if the faulty gene can be blocked, which will
eventually lead to new and live-saving treatments.
For patients with cancer the research could be revolutionary. Phoenix Children’s has
been recognized by U.S. News and World Report’s Best Children’s Hospitals rankings
for providing outstanding clinical care, but research is critical.
“Have a cutting edge research program shows families that we are not just relying
on traditional treatment methods. It gives them the confidence that they are going
to a hospital that offers innovative treatments, develops novel therapies, creates new
diagnostics and keeps up with the constant changes in the medical field.”
Dr. Aziz expects cancer clinical trials to begin within one year, after the proper
infrastructure and necessary staff are in place. Because research is extremely costly,
support from donors has, and will continue to be essential.
“In order to get large grants from the government or the National Science
Foundation, we need preliminary data for studies we propose, and we can’t get that
initial work done without the support of our donors,” says Dr. Aziz. “Their gifts are
life-changing for our patients.” 8
A NEW ERA OF MEDICINE
9
Innovation & DiscoveryThe Biological Material Availability Program (BMAP)
provides processing and depositing of patient specimens
for research, leading to innovation and discovery of new
treatments and diagnostics of pediatric diseases by providing
researchers with high quality samples. To date, Phoenix
Children’s has enrolled over 500 consenting patients and is
managing more than 5,000 tissues.
Other pediatric cancer patients begin treatment
DNA sequencing of cancer patient
Determine mutation
Verify if FDA-approved drug exists for that mutation
Begin clinical trial
After successful treatment, drugs can be relabeled
I AM LIVING PROOF.
A PERFECT 10
Tears welled in Scott’s eyes as he read the letter describing the man whose heart
was now beating in his son Brett’s chest.
“He had to lose his life for my son to live,” Scott says. “That letter represents a
life lost – and a life saved.”
It was a scenario that just four months earlier would have seemed implausible.
In December Brett was a healthy teenager, completing his semester exams at
Sunrise Mountain High School. He started to feel some tightness in his chest
but it would always go away. Expecting to be told it was asthma, which runs in
the family, Scott took Brett to the doctor. That’s when everything changed.
“His resting heart rate was 140 beats per minute,” Scott recalls. “The doctor told
us to get to Phoenix Children’s right away.”
Within an hour Brett was diagnosed with dilated cardiomyopathy. His heart had
been attacked by a virus. He also received news that would forever change all of
their lives. Brett would need a heart transplant.
T MATCH 11
“He was a son, a brother, and a father. He was always a giving person, always cared for others. He lived life to the fullest. We as a family wish you f il i hthe best. Live life to the max. Keep him in your prayers. We as a family would like to know about you one day when you get better. Know that our family member always wanted to help others. May God keep you safe.”
“It was crushing,” Scott says. “All I could think
was, ‘is he going to live?’”
Christmas passed and the family barely
noticed as Brett’s conditioned deteriorated.
It was clear that he wouldn’t make it to
transplant without intervention. On December
30 Brett went underwent open heart surgery
and was fitted with a left ventricular assist
device (LVAD) – a mechanical pump that
would do the work of his left ventricle while he
awaited a new heart.
Although he had to celebrate his 16th birthday
in the Hospital, his body was responding
to the LVAD. He was doing so well that he
became the first patient to leave Phoenix
Children’s with the mechanism.
“The device has typically been used in adults,
but by implanting it in Brett, he was able
to await his heart transplant at home,” says
Dr. John Nigro, cardiothoracic surgical staff
division and section chief.
Then the wait began. Life at home was hardly
normal and it was too risky for Brett to return
to school. All his dad and stepmom Carla
could do was worry.
“I slept on the floor outside his room every
night,” Scott says. “I wanted to be close in case
he needed me.”
Weeks turned into months. The LVAD felt a
little unnatural, but Brett was getting stronger.
He was scheduled to be honored at a spring
training baseball game on March 22 and
was looking forward to finally getting out of
the house. The family joked with Phoenix
Children’s transplant coordinator, April
Colon, that if a heart became available during
the game she shouldn’t contact them until
afterwards.
The call didn’t come during the game, and
Brett had a great time spending the day with
his family and three of his doctors from the
Children’s Heart Center – Dr. Nigro, Dr.
Stephen Pophal and Dr. Daniel Velez.
The call came that night.
“April called around 11 p.m.,” Scott recalls.
“She said they had a possible heart and that we
should get some sleep – yeah right – and talk
in the morning.”
It was a long night. The family cried, hugged,
talked about the possible transplant.
12
“Now that it was happening it was really scary,” Brett recalls.
“I felt so good on the LVAD that I wondered if I should even go
through with the transplant, but I knew it was the best option
to get me back to as much of a normal life as possible.”
Around 4:30 the next morning Scott received a text message
from April. The heart was a match. That afternoon Brett went
into surgery.
“Watching them take Brett back, I was relegated to a crying
heap on the floor,” Scott says. “I was in the Air Force for 26
years and saw a lot of terrible things, but nothing prepared me
for that.”
After he knew the new heart was on its way, Dr. Nigro removed
the LVAD and Brett’s heart.
“Coordinating removal of the damaged heart with transporting
the donor heart allows us to get the new heart in sooner,
increasing the chances of it working,” Dr. Nigro explains.
Anxious for a distraction while Brett was in surgery, Scott and
Carla headed down to the lobby to see if they could spot the car
carrying his new heart. Little did they know it would pull up
right in front of the hospital, and the recovery team, led by Dr.
Velez, would carry the heart through the front door.
“When they walked in with the cooler carrying his heart we just
started crying,” Scott recalls. “We thought about the donor and
how our son was getting a second chance.”
one-year survival rate
heart transplant
venticular assist devices implanted in 2013
29th
100%
3
THE CHILDREN’S HEART CENTER
The Children’s Heart Center at Phoenix Children’s is home to the only pediatric heart transplant program in the state and boasts a 100% one-year survival rate.
Three ventricular assist devices were implanted in patients in 2013. The Children’s Heart Center has the only pediatric LVAD and total artificial heart program in the state.
Brett received the 29th heart transplant at Phoenix Children’s.
“It was crushing,” Scott says. “All I could think was, ‘is he going to live?’”
13
Scott and Brett with his LVAD
The surgery lasted 10 agonizing
hours. Scott and Carla were finally
able to see Brett after midnight, and
incredibly, by the next morning he
was sitting up and talking. The family
was so overcome with gratitude that
they decided to write a letter to the
donor’s family. It was a message of
thanks, comfort and promise. They
vowed that Brett would do great
things and hoped the family would
feel comfortable meeting him at
some point.
Scott sent the email to April, who
forwarded it to the donor network.
As she started going through the
paperwork that had accompanied the
heart, she found something she had
never seen before – a photocopy of a
handwritten letter. It was from
the donor’s family.
As he read the letter, Scott was
struck by how similar the donor
was to Brett.
“Brett has always been a giving
person who cared for others more
than himself,” Scott says. “The letter
could have been written about him.
That’s when we knew the heart was
truly a perfect match.”
Just nine days after receiving his
transplant, Brett walked out of the
hospital, determined to honor his
promise to make the most of his
second chance. He’s focused on
learning to drive and completing his
junior year. After high school he
“When they walked in with the cooler carrying his heart we just started crying,” Scott recalls. “We thought about the donor and how our son was getting a second chance.”
14
Dr. Pophal, Dr. Velez, Brett and Dr. Nigro at a spring training game hours before Brett received the call that a heart was available
plans to study radiology and work at
Phoenix Children’s, a place he now calls
his second home.
Brett also hopes to raise awareness
for the lifesaving impact of organ
donation. As a reminder of the gift he
was given, he hung the framed letter
on his bedroom wall. “All I can say to
my donor and his family is ‘thank you.’
When they’re ready, I hope they will
come listen to his heart beating inside
my chest.”
Scott shares the sentiment. “They’re part
of our family now, whether they realize
it or not.”
“All I can say to my donor and his family is ‘thank you.’ When they’re ready, I hope they will come listen to his heart beating inside my chest.”
15
Dr. Velez and the transplant team bring Brett’s new heart
into the Hospital
BESTTwo-year-old Eliana sits on the floor
outside of a hospital room, happily
coloring. The tubes and IV pole she’s
connected to indicate that she is a
patient, but she’s not sitting outside of
her own room. She’s looking for her
friend, 17-year-old Buddy, who’s in
isolation due to risk of infection. Even
though she knows she can’t see him,
Eliana wants to be there for Buddy.
“She worries about Buddy when he’s
sick,” Eliana’s mother Stephanie says.
“She really cares about him and doesn’t
want to see him in pain.”
Eliana knows that pain. She
and Buddy are the only
two children in the state,
and two of just a handful
in the country, with a
rare gastrointestinal
condition. Neither
was expected to live
beyond their first
year of life. They
can’t eat, have had
multiple surgeries,
live with various
tubes for nutrition
and drainage, and
face a lifetime
of follow up care.
Eliana knows that pain. She
and Buddy are the only
two children in the stat
and two of just a hand
in the country, with a
rare gastrointestina
condition. Neithe
was expected to
beyond their fir
year of life. The
can’t eat, have h
multiple surger
live with variou
tubes for nutriti
and drainage, a
face a lifetim
of followup ca
16
BUDDIESAnd they both spend significant amounts of time
at Phoenix Children’s Hospital. During one of
their mutual hospitalizations, the staff suggested
they meet. “Eliana was newly diagnosed, and
her mom had a lot of questions,” recalls Buddy’s
mother Victoria. “The staff knew that Buddy
liked to help other patients and asked if we were
interested in meeting.”
Stephanie described to Buddy what Eliana had
been through. “I was struck by how similar we
were,” explains Buddy. “I wanted to put her at
ease. I don’t remember my life being any other
way, but for families dealing with this diagnosis
for the first time it’s scary and overwhelming.”
For Stephanie, having that relationship with
Buddy and Victoria has been a lifesaver. “There
isn’t a lot of outside support for these kids since
their condition is so rare. To be able to connect
with people who actually understand what we’re
going through is such a blessing. Eliana really
benefits from all of Buddy’s experiences.”
The families are in constant contact, especially
when one isn’t feeling well, and help each
other through the difficult times. When Eliana
complains of pain, she’s too young to express
exactly what’s wrong, but Buddy can describe
what that pain feels like for him. His explanations
help the staff decide how to treat Eliana.
But Buddy and Victoria insist that they get just
as much out of the friendship. “They understand
what I’m going through and what it’s like,” Buddy
says. “It’s our own little support group.”
The impact on both families has been
immeasurable. But their new extended family is
something that Stephanie knows has made her
daughter’s life better. “My hope for Eliana is that
she will be able to change someone else’s life like
Buddy has changed hers.”
17Eliana coloring outside Buddy’s hospital room
AHMADM
OH
AM
MA
D
I AM LIVING PROOF.
18
What are your first impressions of life in the U.S.? Alamohammad: We like it very much. People have
opportunities to reach their dreams and my children
can get a good education.
Salihan: It’s much safer and we have no problems
getting treatment for our kids. That makes our
lives easier.
Is there anything you miss about Afghanistan? Salihan: We miss our homeland and family,
but overall it’s much better here.
How would you describe the care your children have received? Alamohammad: We feel their treatment is on the
cutting edge – the best care available anywhere –
and we are very pleased with it.
Salihan: It has been perfect in every way.
How does your experience at Phoenix Children’s compare to other hospitals? Alamohammad: The services are similar but the
healthcare system is much better here. There are more
treatment options available.
Salihan: Mohammad’s dialysis was done a little
differently in Turkey. Everyone in the dialysis clinic here
has been so helpful with answering our questions and
getting us the supplies he needs. It has improved life for
us and for him. We’re very appreciative.
What is your hope for your children’s futures? Salihan: It has been difficult to think about the future
with the boys’ health issues, but I just want all of my
kids to lead successful lives.
Alamohammad: My dream is for my children to
finish their education. Ahmad is studying computers
and our oldest daughter wants to become a nurse.
They have opportunities here that they wouldn’t have
had elsewhere.
Ahmad, how do you feel about coming to Phoenix Children’s for treatment? I like it here a lot! I play games with Miss Kim [a child
life specialist] and watch TV while I get my transfusion.
Everyone is really nice to me.
A NEWBEGINNING
It doesn’t matter where you’re from. Parents all want the best for their children and will do whatever it takes to make sure they get it, even if that means making an intercontinental move away from everything they have ever known.
Born in Afghanistan, Ahmad, 14, and Mohammad, 7, came to Phoenix nine months ago with their parents and three sisters. Their trek here wasn’t just for the possibility of a better life, but the need for life-saving healthcare.
Ahmad has thalassemia [a type of anemia] and needs regular blood transfusions and a possible bone marrow
transplant. Undergoing dialysis, Mohammad receives care for renal disease, as well as other therapies, and will most likely need a kidney transplant.
The family spent three years in Turkey before coming to Phoenix. Ahmad and Mohammad could receive better treatment there – in a place safe from the dangers of a war zone. But the International Rescue Committee stepped in and coordinated their latest move to the Valley and Phoenix Children’s Hospital.
Through an interpreter, their father, Alamohammad, and mother, Salihan, opened up about the move and how Phoenix Children’s has impacted their family.
19
When Kellie and Brandon’s week-old son Luke was
admitted to Phoenix Children’s, they went through the
normal procedures and paperwork. But there was also
something unusual waiting for them.
“As soon as we got to his room doctors brought in a
model of his tiny heart,” Kellie says. Luke was born
with congenital heart defects and would require open
heart surgery in his first weeks of life. “It was terrifying,
thinking about our infant son facing surgery.”
Since receiving a $75,000 Leadership Circle grant to
purchase a 3D printer, doctors in the Children’s Heart
Center are now able to somewhat ease the fears of
parents like Kellie by explaining complex procedures
using a life-sized replica of their child’s heart. Using a
CT scan, the printer creates layer upon layer of plaster,
and color codes each vessel, artery, chamber and vein.
“Every heart is so different that the 3D models give us the
best idea of the heart’s condition before surgery, allowing
us to plan the surgeries and make the most complex
procedures less risky,” explains Dr. Stephen Pophal,
medical director of inpatient cardiology.
He and Justin Ryan, an ASU biomedical engineering
student who creates the models, are working to create
the largest library of living congenital heart specimens.
The models have also been used to explain heart
defects to other doctors and University of Arizona
medical students.
But the technology is not limited to printing hearts.
Ryan has also created brains, skulls with malformations,
and ears for patients with missing or deformed ears.
According to Dr. Pophal they are just beginning to
tap into the vast potential applications of the printer.
“This technology is a game changer for our patients.”
A Three Dimensional Difference
YOUR DONATIONS MATTER
20
Luke holding his heart model
Patients who aren’t able to leave their rooms often miss
out on many of the activities throughout the Hospital,
particularly in our Child Life Zone, where they do crafts,
watch movies and concerts, play billiards and foosball,
make some friends, and just forget that they’re in a
hospital for a while. Thanks to a $52,000 donation from
Ensemble Real Estate Solutions, patients can now join in
on the fun from their hospital bed. The gift upgraded the
Hospital’s cable TV network, allowing for high definition
content and 12 new channels. But most importantly, it
enabled us to broadcast live activities and concerts from
The Zone directly into patient rooms and waiting areas.
Every child can now participate in interactive games,
and if they win, a prize is delivered to them. Ensemble
managing director Randy McGrane (above right) was
recently on hand to distribute prizes to the winners of
medical bingo. “Seeing the tangible impact, and the joy
and smiles on patients’ faces is so gratifying.”
When Elizabeth (left middle) was diagnosed
with stage IV non-Hodgkin’s lymphoblastic
lymphoma at age 5, she decided two things: she
was going to beat cancer, and she wanted to help
other kids fighting the same battle. Inspired by
her selflessness and courage, Elizabeth’s family
created the EBB Foundation to do just that.
On Elizabeth’s 8th birthday the EBB Foundation
presented a check for $36,000 in support
of Camp Rainbow, a camp for our patients
diagnosed with cancer or chronic blood
disorders. To raise the funds, 30 friends and
family members pledged to raise at least $1,200
each before running the Disneyland 10K. The
amount they collectively raised will send 30
patients to camp. “We have personally seen the
amazing impact that Camp Rainbow has on the
mind, body and spirit of children battling for
their lives – our daughter being one of them,”
says Heidi Blair, Elizabeth’s mom and founder
of the EBB Foundation. “After the storm there
is always a rainbow, and Camp Rainbow is a
ray of sunshine for these brave children.”
You can raise money for Phoenix Children’s by
competing in races through our Miles That Matter
program. To find out how visit
PCHMilesThatMatter.org.
A Family Gives Back
21
Just Fun and Games
Thanks to a partnership with Valley Toyota Dealers,
it’s now even easier to donate your vehicle to Phoenix
Children’s. Car, truck, motorcycle, RV and boat donations
are 100% tax deductible and save owners the expense of
repairs or the hassles of selling or trading their vehicles.
You can now donate your car at participating Valley
Toyota Dealers simply by speaking with a sales associate.
Proceeds from donated vehicles support the Hospital’s
Hope Fund. For details on donating your vehicle visit
PhoenixChildrens-CarDonations.com.
The Valley Toyota Dealers Association has been a valuable
partner of Phoenix Children’s since 2000. This year alone
they have contributed $105,000 to our Water Watchers
(pictured) and Kids Safe at Home programs, helping
Phoenix Children’s make tremendous strides in drowning
and injury prevention.
22
The Key to Helping our Patients
MAY IS FOR MIRACLESThroughout the month of May several of our Children’s Miracle Network corporate partners hold fundraising campaigns to support the Hospital. Check out some of the fun and creative ways employees at partner stores raised funds for Phoenix Children’s this spring.
Thanks to associates, vendors and customers,
Walmart and Sam’s Club locations raised a
whopping $985,000.
Darlene takes donations to break out of jail at
the Walmart in Anthem.
The Avondale Walmart store displays Phoenix
Children’s and Children’s Miracle Network
pride in the beverage aisle.
Costco matches a percentage of funds donated by customers and
employees, which brought their total amount raised to nearly
$1,375,000 - the 5th largest amount for any Costco in the nation!
Phil Giltner (above middle)
of Shamrock Farms presents a
$500,000 check to the Southeast
Gilbert Costco for the third
consecutive year.
Daisy Duck, a.k.a. Cave Creek
Costco employee Lisa, gets into
character to collect donations.
23
SUPERHERO CELEBRATIONABC15 TelethonViewers pledged to become Heroes for Hope as we celebrated our superhero patients during the
3rd Annual ABC15 Telethon. The one-day broadcast from the Hospital’s Cafeteria generated more
than $355,000 for the Hospital’s Hope Fund and featured ABC15 talent, patient stories, superhero
window washers, therapy dog tricks and appearances by Mayor Greg Stanton, ABC’s Chris Powell,
and Arizona Cardinals players Mike Leach, Lorenzo Alexander and Darren Fells.
Thank you to sponsors Sanderson Ford & Lincoln, Desert Schools Federal Credit Union, Hungry Howie’s Pizza, Biltmore Loan
& Jewelry, Ace Hardware, Arizona Central Credit Union, Arizona Lottery, Charleston’s Restaurant, Cobblestone Auto Spa,
Culver’s, Chicken of the Sea, Curacao, Dutch Bros. Coffee, Fry’s Food Stores, Getup4.com, IHOP, Jersey Mike’s, Landings Credit
Union, Macy’s, Novocur Pain Clinics, Panda Express, Red Devil Restaurant, Sagicor, Sleep America, Smashburger, Sprouts
Farmers Market, Taylor Morrison, The UPS Store, TITLE Boxing Club, Valley of the Sun Active 20-30 Club, Walgreens,
Walmart, Whataburger and Zerorez.
24
THAT’S A
SPECIAL THANKS TO THE CORPORATE PARTNERS, SPONSORS, EVENT HOSTS, PARTICIPANTS, VOLUNTEERS AND FRIENDS WHOSE CONTRIBUTIONS ARE CRITICAL TO THE LIFE-SAVING CARE PROVIDED AT PHOENIX CHILDREN’S.
A DOWNRIGHT GOOD TIMEDownright Beautiful Fashion ShowMore than 200 attendees were on hand at the Musical Instrument Museum for the
inaugural Downright Beautiful Fashion Show, raising more than $14,000 for the
Down Syndrome Clinic. Wearing fashions by Kohl’s, patients walked the runway
escorted by Miss Arizona pageant title holders, and friends and family members.
Thank you to sponsors Hastings and Hastings, RED Development, Kohl’s, Kendra Scott and Nothing
Bundt Cake.
W R A P
25
DANCE PARTY WITH A PURPOSEASU Dance MarathonASU Students kicked up their heels during their 2nd Annual Dance Marathon and
brought in more than $44,000. The all-night dance party included patients sharing
their stories, live performances, carnival activities and a birthday party for one of
our patients who celebrated with 1,000 new friends.
Thank you to sponsors Arizona State University, Whataburger, Apache Station, The District at Tempe, 922, and Vista Del Sol.
PAYING IT FORWARDSteak 44 owners Mike, Jeffrey and
Dennis Mastro and Scott Troilo
presented $22,000 to Phoenix
Children’s after hosting a series
of private fundraising parties
leading up to the restaurant’s
opening. Mike and Brenda
Mastro’s son Jake (pictured) is a
former patient who was treated
for a life-threatening strep
infection 23 years ago.
26
LEADING THE WAYLeadership CircleThe 10th year of Leadership Circle was one for the record
books, with 235 members contributing a combined total
of $450,000. Members voted on how to spend the funds,
selecting from seven final proposals presented by doctors
and staff during the Leadership Circle Luncheon at
Paradise Valley Country Club. Six of the seven finalists
were awarded funding during the Grant Recipient
Reception. Selected projects include a device to provide
advanced rehabilitation to children with upper
extremity weakness due to neurological disorders and
a pilot study to decrease the time to diagnose and treat
leukemia patients.
FEASTING WITH FIDODine With Your DogNearly 25 animal-assisted therapy teams and 180 guests
helped raise $31,000 for the PetSmart Paws Can Heal
Animal-Assisted Therapy program during this annual
event at the PERA Club. The evening featured dinner
for both people and pooches and a program emceed by
Pat McMahon that included a therapy dog showcase.
Thank you to sponsors PetSmart, Alta Vista Veterinary Hospital
and Arizona Cardinals.
THAT’S AW R A P
27
‘SUBS’TANTIAL SUPPORT
Jersey Mike’s Subs celebrated
their annual Month of Giving
with a donation topping $58,000.
Throughout the month of March
customers made contributions at the
register, and Jersey Mike’s hosted a
Day of Giving, with 100% of sales
from all Valley locations benefiting
the Hospital.
UP TO THE CHALLENGE
Nearly 85 golfers competed for The
Challenge Cup at the Chiricahua
Course at Desert Mountain. Raising
nearly $180,000, this inaugural event
hosted by Dave and Stephanie
Reese of Platinum Homes, paired
each foursome with a PGA pro and
offered a tee prize at every hole.
Thank you to sponsors Platinum Homes and
Dave and Penny North.
28
MAKING EVERY MILE COUNTMiles That MatterMembers of Miles That Matter ran, walked, pedaled,
hiked, and swam more than 5,000 miles for our patients,
raising $150,000 for the Hospital’s Hope Fund. Racing
in honor of our MVPs (Most Valuable Patients),
participants competed in the P.F. Chang’s Rock ‘n’ Roll
Marathon and Half Marathon, El Tour de Mesa, Lifetime
Tri, or another event of their choosing, making every
mile matter for our patients.
Thank you to sponsors University of Phoenix, racelab, MOJO
Yogurt, Elements Therapeutic Massage and Anderson Advertising
& Public Relations.
THAT’S A
REFINING CAR SAFETYWestern Refining Company contributed $75,000 to the
Kids Ride Safe program, helping Phoenix Children’s
actively promote child passenger safety in and around
cars. Western Refining has supported the program for six
years, helping us distribute more than 10,000 car seats
and raise awareness with radio spots, print materials and
mobile apps.
W R A P
29
SWINGING FOR MIRACLESDesert Schools Federal Credit Union hosted
their 16th Annual Children’s Miracle
Network Hospitals Golf Tournament at
Encanterra Golf and Country Club, raising
$341,000 for our 1 Darn Cool School.
To date the tournament has raised more
than $2.4 million.
REVVING IT UP FOR KIDSMore than 1,000 car enthusiasts ventured out
to see 240 vehicles at the All American Sands
Chevrolet Car Show, hosted by Sands
Chevrolet and Desert Sands Corvette group.
The event raised more than $29,000 for the
Hospital’s Southwest Valley Specialty and
Urgent Care Center.
WALKING FOR A CUREStudents from more than 100 local
schools laced up their sneakers to
donate $48,000 towards research
at Barrow Neurological Institute at
Phoenix Children’s during the
13th Annual Students Supporting
Brain Tumor Research Walk-a-thon at
Saguaro High School.
30
“FORE” THE KIDSPGA pro Scott Sackett hosted “Tee It Up For Kids”
at McCormick Ranch Golf Club, raising more than
$40,000 for our Child Life Department. More than
50 Phoenix Children’s patients and their siblings
worked on their golf game during a clinic with the
pros, while goofing around with Larry Fitzgerald
and the Phoenix Suns Gorilla.
CORNERING SUPPORT FOR PCHCorner Store’s Miracle Balloon campaign during the
month of June contributed nearly $75,000. Corner
Store has raised over $800,000 for Phoenix Children’s
over the past 15 years.
THAT’S A
FEEL GOOD PARTNERSHIPHarkins Theatres continues their commitment
to our Feel Good Partnership, contributing $1
million in cash and in-kind gifts to benefit our
patients and families treated at our Center for
Cancer and Blood Disorders. Harkins’ support
includes donations of movie passes, special
movie screenings for patient families, Loyalty
T-Shirt revenue, public service announcements,
and gifts for fundraisers.
W R A P
31
RUNNING AGAINST CANCER
More than 3,000 runners and
walkers converged on the Grand
Canyon University campus
for the Run to Fight Children’s
Cancer, a 5K and 10K race and
survivor’s walk that brought in
$50,000 for the Center for Cancer
and Blood Disorders. The event
was kicked off by official race-
starter and Phoenix Children’s
patient Jack (pictured with his
family) and offered family-
friendly activities, music and
professional sports team mascots.
TEEING OFF FOR PCHEmployees and
vendors came
together for McLane
Sunwest’s Annual
Golf Tournament at
Greyhawk Golf Club,
bringing in $55,000.
TURNING EVERYDAY ERRANDS INTO LIFESAVING SUPPORTValley-wide Albertsons
stores contributed $50,000
to the Hospital’s Hope
Fund by selling Phoenix
Children’s icons at the
register during the month
of May.
32
FLIPPING FOR FLAPJACKS Local IHOP restaurants raised nearly
$47,000 during National Pancake
Day, as they served guests a free
short stack of buttermilk pancakes
in exchange for a donation.
THAT’S A
MAKING PATIENTS HAPPY AND HEALTHY
The LPGA Legends Tour returned
to Grandview Golf Course for the
Walgreens Charity Classic, featuring 40
LPGA legends competing in a two-day,
36-hole tournament. Walgreens stores
also sold icons throughout the month
of April. Together the two events raised
nearly $200,000, bringing Walgreens
lifetime giving total to Phoenix
Children’s to more than $2.7 million.
W R A P
33
C A N ’ T M I S S
KTAR GIVE-A-THONNow in its 14th year, the Hospital’s largest annual fundraiser features simulcasts from KTAR’s two powerhouse stations, 92.3 KTAR and 98.7 Arizona Sports. The live broadcast from the Phoenix Children’s cafeteria includes on
air personalities, celebrity appearances and inspirational patient stories. Become a Miracle Maker by donating $20 per month and having a PCH teddy bear given to a patient in your name. To donate call (602) 933-4567 during the event or visit GiveAThonforPCH.com.
24 & 25 SEPTEMBER
Whether it’s a marathon, bike race or triathlon, make every mile count by racing in honor of our patients through Miles That Matter. Reach different fundraising levels and receive benefits like a race shirt, paid entry fees and patient artwork. You can support Phoenix Children’s with any race you compete in, including our three signature events. Find out how at PCHMilesThatMatter.org.
18JANUARY 2015
11APRIL 2015
PF CHANG’S ROCK ‘N’ ROLL MARATHON AND HALF MARATHON
EL TOUR DE MESA
Miles That Matter
18The 3rd Annual Bob’s Biker Blast will roar into town for a party featuring a bike ride, food, stunts, and music with headliner Heart, hosted by GoDaddy’s Bob Parsons, Harley-Davidson of Scottsdale, and Go AZ Motorcycles. For information email pbarney@phoenixchildrens.com.
OCTOBER
BATTLE OF THE BANDS The doctors of Central Line will battle the lawyers of Retro Active for rock supremacy during the 8th annual event at Gypsy Bar in CityScape Phoenix. Visit PCHBattleoftheBands.com for presale tickets or information.
OCTOBER 11
34
E V E N T S
1CHILDREN’S FIGHT FOR LIFE CASINO NIGHT Go all in for our Center for Cancer and Blood Disorder patients at the 9th Annual Children’s Fight for Life Casino Night at the Scottsdale Resort & Conference Center, featuring cocktails, dinner, silent auction and casino games. Get your tickets at ChildrensFightforLife.com.
NOVEMBER
23JOIN LEADERSHIP CIRCLE
Have a say in how your dollars help our patients by joining Leadership Circle with a $1,000 minimum
donation. Your gift will be pooled and fund high-priority clinical needs, identified by physicians, nurses, and others through a competitive grant process. For information visit
PCHLeadershipCircle.com.
OCTOBER
14IGNITE HOPE The 3rd annual candlelight walk to the Hospital will Ignite Hope for patients hospitalized during the holidays. Following a short program and holiday carols with patients and special guests, the Phoenix Children’s Christmas tree will be lit. Sign up at PCHIgniteHope.com.
DECEMBER
20FESTIVAL OF TREES This premier holiday event showcases several holiday trees decorated by local designers and offers the opportunity to place your bid in person or online and take home the beautiful trees on display at Scottsdale Fashion Square. See PCHFestivalofTrees.com to bid.
NOVEMBER throughDecember 2
21PHOENIX CHILDREN’S HOSPITAL GOLF TOURNAMENT Tee off at Troon North Golf Club for the 16th Annual PCH Golf Tournament, a 4-person scramble with big cups. Golfers are also invited to the exclusive Night BeFORE party on November 20th at The Golf Tank. Register at PCHGolf.com.
NOVEMBER
35
11DINE WITH YOUR DOG An evening out with man’s best friend at The Pavilion at PERA Club includes dinner for two (one leashed dog and their human companion), silent auction/raffle, and the Canine Couture Fashion Show. Proceeds benefit the PetSmart Paws Can Heal Animal-Assisted Therapy program. See DineWithYourDog.org for details.
APRIL
28BEACH BALL Our patients know how to turn lemons into lemonade. Celebrate their successes during the Lemonade Soiree at the 22nd Annual Beach Ball. This year’s event at The Phoenician will benefit the Center for Cancer and Blood Disorders. For tickets or more information visit PCHBeachBall.com.
FEBRUARY
2015ABC15 TELETHON The 4th Annual ABC15 Telethon will be broadcast live from the Hospital’s cafeteria and include on-air personalities, a phone bank staffed by sponsors and volunteers, celebrity guests and patient families sharing their stories. Viewers can become a “Hero for Hope” and give a gift to a patient in their name. For sponsorship information contact sgarcia4@phoenixchildrens.com.
SPRING
8COMEDIANS FOR A CURE Hosted by Boomer Nichols, the evening will include cocktails, silent auction, raffle and top comedians coming together at Stand Up Life to raise money for neuroblastoma research. For information email lmorton@thejackmortonfoundation.org.
MARCH
C A N ’ T M I S S
7RUN TO FIGHT CHILDREN’S CANCEROne of the fastest-growing events in the Valley, this 10K run, 5K run/walk and Survivor’s Walk on the Grand Canyon University campus raises funds for the Center for Cancer and Blood Disorders. A Phoenix Children’s patient will kick off the event, which includes activities for the whole family. Visit RuntoFightCancer.com for details.
MARCH
36
E V E N T S
MORE UPCOMING
GET ON THE GREENSDuel in the Desert Golf TournamentSeptember 25Ocotillo Golf ResortAfter a round of golf and hole in one challenge, relax during lunch and an awards ceremony at the 13th annual tournament hosted by McLane Foodservice. Email victoria.jones@mclanefs.com for information.
Sigma Chi Golf TournamentSeptember 27Legacy Golf ResortThe Phoenix Sigma Chi Alumni will host their Sigma Chi Charity Golf Tournament, featuring a round of golf, lunch and an awards ceremony. For details contact dpatterson27@cox.net.
The 6th Annual Ryan Thomas Memorial Golf TournamentFebruary 21Mesa Country ClubThe 6th annual golf tournament and dinner benefits our Water Watchers program. Visit TheRyanThomasFoundation.com to register.
GET MOVINGMiracle MarathonSeptember 16 -October 27Complete a marathon at your own pace by walking, running or moving one mile every day. Sign up online and select Phoenix Children’s Hospital at MiracleMarathon.org.
Moon Valley Grasshopper Bridge 5KSeptember 27Moon Valley ParkThe 9th annual event features a USATF sanctioned and certified 5K run and walk, two-person relay and 1K fun run and walk. Register at MVGrasshopperBridge5k.com.
Gym & Swim Festival November 8Arizona Sunrays Dance Center & Hubbard Family Swim School This family event features an open gym, dance and swim classes, bounce houses, food, live music, face painting and other activities. Email Kenzie@arizonasunrays.com for information.
Phoenix CureSearch WalkNovember 16Kiwanis ParkThis walk honors children whose lives have been affected by childhood cancer, while raising funds for lifesaving research. Register at CureSearchWalk.org.
Students Supporting Brain Tumor Research Walk-a-thonFebruary 28Saguaro High SchoolJoin more than 1,000 students and families walking in honor of loved ones to raise money for brain tumor research during the 14th annual walk. Register at ssbtr.org.
Children’s March on Child AbuseSpring 2015Phoenix ZooPut your best foot forward to support our Child Abuse Prevention programs. Email childrensmarch@phoenixchildrens.com for details.
GET REVVED UPCruisin’ for a CauseOctober 18Goodyear Ball ParkThis car and bike show presents American classics, classic trucks, hot rods & customs, motorcycles, race cars and supercars. Visit ForeverCruisin.com.
Phoenix Greens Car Show February 28Steele Indian School ParkRegistration is open to all makes and models for this show with 32 class awards, plaques, raffles, music and food. Visit AZRodandClassic.com.
All American Sands Chevrolet Car ShowMarch 22 Sands ChevroletThe Desert Sands Corvette Group hosts a car show that’s out of this world to raise funds for the Hospital’s Southwest Valley Specialty and Urgent Care Center. Open to all makes and models. Visit SandsCarShow.com for information.
GET BUSYMiracle Balloon CampaignsOctober 1-31Valley LocationsStop by Great Clips and Long John Silver’s and support Phoenix Children’s through Miracle Balloons and other fundraisers.
Hands of Promise October 4W Scottsdale HotelThe 3rd Annual Hands of Promise Charity Gala will feature silent and live auctions, raffle prizes and casino games. Visit HandsofPromise.org for tickets.
Board of Visitors Care CardOctober 17-26Shop with your heart by purchasing a $60 Care Card and save 20% at more than 600 retail locations and restaurants. Proceeds benefit Phoenix Children’s Hospital. Visit TheCareCard.org.
Extra Life 24-Hour Game DayOctober 25Play video games for 24 hours and raise money for our patients by having friends and family sponsor your gaming. Register online and select Phoenix Children’s at Extra-Life.org.
37
E V E N T S
2929 E. Camelback Road, Suite 122 • Phoenix, AZ 85016
PEDIATRIC INPATIENT UNIT –
MERCY GILBERT | (602) 933-4900
3555 S. Val Vista Dr., Gilbert, AZ 85296
SPECIALTY AND URGENT CARE CENTER –
EAST VALLEY | (480) 833-5437
5131 E. Southern Ave., Mesa, AZ 85206
SPECIALTY AND URGENT CARE CENTER –
NORTHWEST VALLEY | (623) 972-5437
20325 N. 51st Ave., Ste. 116, Glendale, AZ 85308
SPECIALTY AND URGENT CARE CENTER –
SCOTTSDALE | (480) 922-5437
6990 E. Shea Blvd., Scottsdale, AZ 85254
SPECIALTY AND URGENT CARE CENTER –
SOUTHWEST VALLEY | (623) 312-2000
1665 N. Avondale Blvd., Avondale, AZ 85392
SPECIALTY CARE – MERCY GILBERT CENTER
(602) 933-3366 (CARDIO)
(602) 933-6262 (NEURO)
3420 S. Mercy Rd., Ste. 121, Gilbert, AZ 85297
PHOENIX CHILDREN’S HOSPITAL MAIN CAMPUS
1919 East Thomas Road, Phoenix, AZ 85016(602) 933-1000 | (888) 908-KIDS (5437)
www.phoenixchildrens.com
PHOENIX CHILDREN’S HOSPITAL FOUNDATION
(602) 933-4483
foundation@phoenixchildrens.com
GivetoPCHF.org
facebook.com/FriendsofPCH
twitter.com/FriendsofPCH
Pledge your support on September 24 and 25 during the
KTAR Give-A-Thon on 92.3 KTAR and 98.7 Arizona Sports
and have a teddy bear delivered to a hospitalized patient
in your name. Call (602) 933-4567 or donate online at
GiveAThonforPCH.com. TheCareCard.org
S H O P W I T H YOUR HEART
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