children's view spring 2014

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also inside A Million Stories of Hope

Children’s

Saving Lives Before BirthThe Wonder of Fetal Surgery

Founded in 1855, The Children’s Hospital of Philadelphia is the birthplace of pediatric medicine in America. Throughout its history, a passionate spirit of innovation has driven this renowned institution to pursue scientific discovery, establish the highest standards of patient care, train future leaders in pediatrics and advocate for children’s health. A haven of hope for children and families worldwide, CHOP is a nonprofit charitable organization that relies on the generous support of its donors to continue to set the global standard for pediatric care.

EXECUTIVE VP & CHIEF DEVELOPMENT OFFICER

Stuart Sullivan

ASSISTANT VP, COMMUNICATIONS & DONOR RELATIONS

Mark Turbiville

EDITOR

Julie Sloane

WRITERS

Louis Bell, M.D.Eugene Myers

PHOTOGRAPHY

Ed CunicelliJennifer Grissom PhotographyKevin Monko

DESIGN

Kathy Smith

PRODUCTION

Kimberly CaulfieldNicole Keane

What does it mean to provide the most cutting-edge, expert pediatric care in the world? Or to have “luminary

programs” found nowhere else? These concepts may sound

abstract, but for many of the children in this issue, finding help

at The Children’s Hospital of Philadelphia has meant something

very real: a chance to live.

For Joseph Agosto from Jacksonville, Fla., a lung tumor

diagnosed before birth would have been fatal had his parents not

found the Center for Fetal Diagnosis and Treatment (CFDT) at

CHOP. The CFDT is quite literally the most experienced center

in the world for Joseph’s condition — one of a handful that is

even able to treat him. Fetal surgery at CHOP saved his life, and

I encourage you to read his incredible story on page 8.

Niels and Lachlan Strautnieks (Page 14) are another perfect

example. Before their family found CHOP, many doctors didn’t

even believe they were sick. CHOP was able to give them a

diagnosis of mitochondrial disease, and even though their

particular condition has never been seen before, a collaborative

team of specialists at CHOP has taken their case and improved

their health dramatically.

At 21, Brandon Terrance (Page 16) had an “inoperable” brain

tumor. That is, until he found a neurosurgeon at CHOP who not

only agreed to operate but also was successful in removing most

of the tumor. Brandon is still fighting, but his family is so grateful

for the CHOP team that fights with him.

Their stories are dramatic, but children like them can be

found all over the Hospital. All of us at CHOP are proud to treat

the most complex cases and give as many children as possible the

chance at happy, productive lives. We are so grateful to count you

as a partner in that mission. Thank you for all you do!

OFFICERS

Mortimer J. BuckleyChairman

Mark Fishman Vice Chairman

Tristram C. Colket, Jr., R. Anderson Pew Honorary Vice Chairmen

Steven M. Altschuler, M.D. Chief Executive Officer

Clark Hooper Baruch Secretary

Anthony A. Latini Treasurer

Thomas J. Todorow Assistant Treasurer

Jeffrey D. Kahn, Esq. General Counsel & Assistant Secretary

Margaret M. Jones Assistant Secretary

BOARD OF TRUSTEES

N. Scott Adzick, M.D. • Steven M. Altschuler, M.D. • Clark Hooper Baruch • A. Lorris Betz, M.D., Ph.D. • Aminta Hawkins Breaux, Ph.D. •

Mortimer J. Buckley • Reid S. Buerger • Dominic J. Caruso • Tristram C. Colket, Jr. • Arthur Dantchik • Mark Denneen • Mark Fishman •

Lynne L. Garbose, Esq. • Shirley Hill • David P. Holveck • Anthony A. Latini • Lissa Biesecker Longacre • Sharad Mansukani • James L. McCabe • John Milligan, C.P.A. • Akiko M. Miyashita • Asuka Nakahara •

Jeffrey E. Perelman • R. Anderson Pew • Gerald D. Quill • Daniel T. Roble • David B. Rubenstein • Anne Faulkner Schoemaker • Salem D. Shuchman • Kornelis Smit • Joseph St. Geme III, M.D. • Binney Wietlisbach • Nancy Wolfson • Dirk E. Ziff

EX-OFFICIO

Paula Agosto, M.S.N., R.N. • Tami Benton, M.D. • Robert Doms, M.D., Ph.D. • Jeffrey A. Fine, Psy.D. • William J. Greeley, M.D., M.B.A. •

Diego Jaramillo, M.D., M.P.H. • Ralph Wetmore, M.D.

EMERITUS

Leonard Abramson • Stephen B. Burke • Ruth M. Colket •

Peter C. Morse • George Reath Jr. • Stuart T. Saunders Jr., Esq. •

Richard D. Wood Jr.

Steven M. Altschuler, M.D. Chief Executive Officer © 2014 The Children’s Hospital of Philadelphia, All Rights Reserved. 8735

the view from here

COMMENTS AND INQUIRIES SHOULD BE ADDRESSED TO:

The Children’s Hospital of Philadelphia Foundation34th Street and Civic Center BoulevardPhiladelphia, PA [email protected] For information about making a contribution to support CHOP, call 267-426-6500 or visit GiftofChildhood.org. PRINTED BY

Children’s

LLC

Children’s View is produced by The Children’s Hospital of Philadelphia Foundation.

The kids on our Youth Advisory Council give CHOP important insider feedback.

2Today@CHOP

Our incredible team of volunteers, a security guard who went above and beyond, and more

14Alternative EnergyThanks to CHOP, mitochondrial disease can’t hold back brothers Niels and Lachlan.

16Brandon’s Lifesavers From family to doctors to chaplains, it takes a team to help 24-year-old Brandon overcome a brain tumor.

20Volunteers in Philanthropy A season of fabulous fundraising events

8184Ashley, 13, is bravely relearning to walk with the help of her physical therapists.

Seacrest Studios continues to bring incredible celebrities to CHOP.

© 2014 The Children’s Hospital of Philadelphia, All Rights Reserved. 8735

The Smallest PatientsFetal surgery saved Joseph Agosto’s life — before he was even born. Go behind the scenes of his incredible story.

Children’s

cover story

6

On the cover: Joseph Agosto, 4 months, underwent lifesaving fetal surgery at the Center for Fetal Diagnosis and Treatment.

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Hundreds of Helping HandsAt The Children’s Hospital of Philadelphia, we are lucky to have hundreds of incredible volunteers who do everything from pet therapy to playroom cleanup to volunteer fundraising. CHOP’s Volunteer Services Department connects community members with departments at CHOP that could use their help. Volunteers undergo a thorough background check and medical screening, as well as a hands-on orientation that can last up to eight hours. But each year, hundreds more apply to volunteer than CHOP can accommodate. (Don’t worry — we’re working to expand the program!) If you’d like to volunteer, visit www.chop.edu/volunteer or call 215-590-1093. Meanwhile, take our quiz and see how much you know about volunteering at CHOP.

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How many total hours did volunteers invest at CHOP last year?A. 9,000B. 14,000C. 28,000D. 48,000 Which of the following do CHOP volunteers not do?A. Help with arts and crafts at a Child Life activityB. Gently hold and rock babies in their armsC. Deliver medication to patientsD. Push the Wawa Cart, delivering free coffee and juices to parents

What is the minimum time commitment a CHOP volunteer makes?A. Once a week for six monthsB. Once a week for a yearC. Twice a month for six monthsD. Twice a month for a year

How are CHOP volunteers compensated?A. HugsB. SmilesC. Thank yousD. All of the above

How many active volunteers does CHOP have?A. 300B. 400C. 500D. 600

Last year, volunteers organized community-based fundraising events that brought in how much for CHOP?A. $750,000B. $1.8 millionC. $2.4 millionD. $3.5 million

Answ

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1. B

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today@CHOP

kids in the hallWe walked the halls of CHOP and asked patients the same question:

“I make lots of friendship bracelets in the playroom.”

Alicia, 18, Hematology

“I call my friends to video chat. They call me every day from

school at recess.” Maddy, 11, Pulmonology

“Playing on the computer. I like Spider-Man!” Quran, 9, Neurology

“I like to come to the playroom to tie-dye.”Amari, 14, Hematology

“I play a lot of video games. Wipeout is my favorite.

I draw too.”Aiden, 10, Neurology

“I like to draw butterflies with colored pencils.”

Ava, 8, Neurology

It isn’t easy being a kid in the hospital. How do you keep your spirits upwhile youre at CHOP?’

2 l Children's vlew l Spring 2014

Answ

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1. B

, 2. C

, 3. B

, 4. C

, 5. A

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today@CHOP

Spring 2014 l Children's vlew l 3

When we refer to the GIANT Lobby in the future Buerger Center for Advanced Pediatric Care, we don’t just mean it will be a large and impressive space to welcome visitors to the state-of-the-art outpatient building. GIANT Food Stores recently made a giant $5 million donation to CHOP, and the new GIANT Lobby and Welcome Desk will be named in the company’s honor.

Thanks to a generous gift from longtime supporter Gerald Shreiber, CHOP’s pet therapy program is expanding, bringing even more furry friends to patient bedsides. With the new gift, CHOP aims to increase the number of dog/handler teams from the current 29 to as many as 80. In order to do that, the program has hired a new full-time coordinator, Lisa Serad, who herself has been a volunteer with the program for 20 years, most recently with her Rhodesian ridgeback named

Giving News

A GIANT Gift

Teaching Dogs to Heal

GIANT has long been a CHOP supporter, and much of the company’s philanthropy has focused on programs like the Child Life, Education and Creative Arts Therapy Department. While GIANT will continue to support those important services, it has also made a big commitment to the Buerger Center, which will open in 2015. The soaring, natural light-filled GIANT lobby will have a winding glass-walled ramp that takes visitors to the second floor, while passing by activity stations on various landings. An estimated 1 million visitors every year will pass through the GIANT lobby. And as always, when you go to any GIANT in the Philadelphia region and donate to Children’s Miracle Network at checkout, those funds go directly to CHOP.

Rumor. Serad is also a behavior evaluator with Therapy Dogs International, allowing her to evaluate new therapy dogs. The beloved pooches, which visit patients throughout the Hospital, will also now be part of a newly renamed program: the Gerald B. Shreiber Pet Therapy Program. The dogs now sport blue bandannas and bags with the program’s logo, and their handlers are giving out a new series of trading cards featuring the dogs’ photos and information. Recruiting new teams is a big priority for Serad, and with additional volunteers, she hopes to expand the program to more areas of the Hospital, and perhaps even into the CHOP Care Network satellite locations. Interested in volunteering with your dog? Visit chop.edu/pettherapy or contact [email protected] for more information.


The Children’s Hospital of Philadelphia is known for its unparalleled expertise in what’s good for children and their health, but when it comes to the experience of actually being a CHOP patient, there’s one source of information that can’t be topped: the kids themselves. That’s why in 1999, CHOP created the Youth Advisory Council (YAC), a group of 30 CHOP patients who meet monthly to give their input on everything from the design of new patient pajamas to the cafeteria menu to the artwork that will be in the new Buerger Center for Advanced Pediatric Care. They do it purely for the chance to give back to other kids and make the CHOP patient experience better.

At one recent meeting, staff from CHOP’s REACH program, which helps older teens with chronic illness manage their health as they become independent and go to college, sought YAC’s feedback. “What are you worried about?” they asked. “What information would most help you?” YAC members thoughtfully looked over the REACH brochures and suggested the team create an electronic version the kids can read on their phones, and maybe add more fun colors. It’s quickly evident that everyone in the group is poised and well-spoken. Each year, the group’s leaders reach out to nurses, Child Life staff, social workers and other CHOP teams to ask for nominations. “We ask for recommendations of kids ages 11 to 17 who are energetic, can provide

thoughtful feedback and have had an experience at CHOP — be that inpatient or outpatient,” says CHOP social worker Stephanie Fooks-Parker, M.S.W., who has been one of the group’s leaders since its inception. YAC has created several videos, including one on how clinicians can best speak to teen patients and another on handwashing. Last year, they created a faux news broadcast video that helps orient new patients to life at CHOP. They also know how to have fun, both throwing parties for inpatients and joking around at meetings. YAC members have a lot of inside jokes, 19-year-old Jessica Franklin says: “Most of them involve yaks.” — JULIE SLOANE

today@CHOP

To see the patient orientation video written by and starring YAC members, please visit childrensview.org.

SPOTLIGHT ON:

Youth Advisory Council


today@CHOP

my CHOP hero

To honor a CHOP employee who has gone above and beyond for your family, go to giftofchildhood.org/myhero.

“My daughter has been to many CHOP appointments in her three-year life, and she has been a trooper

each step of the way. She always smiles after each one and loves earning her stickers for being a good patient. After one recent appointment, we went to the main lobby of the Hospital to support a bake sale for the Ketogenic Kitchen. On our way out, my daughter realized she didn’t get a sticker from her doctors. She disappointingly said, ‘Daddy, I didn’t get a sticker!’ She didn’t yell. She didn’t throw a tantrum. She simply made a statement that displayed her disappointment.’ Just as we turned to respond to her, a security guard named Don Hemphill overheard and stepped in: ‘You didn’t get a sticker?! Hold on, we’re going to fix that! Will you wait here for two seconds?’

After a cold, snowy winter, there are signs of new life at the Sea Garden! From now until November, the garden, which is on the third- floor roof deck of Children’s Seashore House, will be busy with planting, growing, harvesting and fun activities for kids. The Sea Garden, which opened in 2012, quickly became a favorite warm-weather hangout for patients, parents and staff alike, and there are big plans for its 2014 season. Each month brings a new themed event. April’s Earth Day party kicks off the growing season, complemented by lessons on gardening and recycling, and Mayfair the following month is a celebration of all things spring. The tomato harvest in August is a favorite, with a tomato recipe contest and

Aramark chefs serving up samples of the winning dish. For each special event, Child Life staff plan fun crafts and activities for kids, like painting terra cotta pots or making caterpillars out of cherry tomatoes. And this year, watch out for more outdoor movie nights! Every month, the garden also has a “work day,” where patients and families can work with Pennsylvania Horticultural Society and Groundswell volunteers to plant, weed, harvest and learn all about gardening. They also dress up the three “carecrows” in seasonal outfits. The garden grows veggies and herbs like

With that, Sergeant Hemphill went into an office and resurfaced a couple moments later with a toy CHOP Security badge for my daughter. She was elated. She couldn’t wait to get home to show her brothers how cool her new badge was. I know it wasn’t a big deal, but at that moment, it was a wonderful way to end a difficult day. Now, rather than focusing on the difficulties of the day when family and friends are asking what’s going on, I’m raving about the phenomenal security guard with the huge heart who helped make our day a little better. Rather than my daughter describing what the doctors asked her to do, she’s bragging about her new badge. He didn’t have to notice us. He didn’t have to interact with us. But he did and that made a huge difference.” — David Waldman, father of Arden, 3

Don Hemphill Sergeant with CHOP Security since 1995

tomatoes, eggplant, basil, cucumbers, peppers and chives. Many of the vegetables are used by rehab therapy groups in weekly cooking activities.

Any leftovers are served up in the cafeteria. The Sea Garden, which is open daily from sunup to sundown, has been a wonderful resource for families, for parents who want a quiet place to read and for kids who need a

break. “This outdoor space is a huge benefit, especially for some of our longer-term patients,” says Child Life manager Jen Sciolla. “It gives them a space within the Hospital to get a breath of fresh air without leaving the Hospital.” — JULIE SLOANE

Hope BloomsBIG

today@CHOP

As far as we’re concerned, kids are the biggest stars at CHOP. But over the last year, Seacrest Studios has brought in dozens of big-name celebrities to brighten our patients’ days. In fact, since it opened in 2011, the multimedia broadcast studio, built in CHOP’s Colket Atrium with support from the Ryan Seacrest Foundation and NBCUniversal, has been thrilling patients with visits from hundreds of singers, musicians, athletes and actors from all over the country. Seacrest Studios provides continuous entertainment on Galaxy 51, CHOP’s closed-circuit TV network, allowing patients to take part in the excitement even when they can’t leave their rooms. Media Programs staff, student interns and volunteers operate the studio, providing more than 25 hours a week of live programming focused on patient and family education — and, of course, having fun. The diverse programming lineup includes games like bingo and Guess or Dress, dance parties deejayed by kid patients, sports shows, and other favorites like Miles & Molly in the Morning and World Travel Broadcast. Each show is designed to involve kids and help distract from or cope with their treatments or illness, as well as broaden their horizons and encourage a sense of community. A visit from a beloved celebrity always draws a crowd to Seacrest Studios. Guests often give live performances, answer questions from patients and pose for photos. Some recent visitors include [1] Adam Levine, [2] New Kids on the Block, [3] Kelly Clarkson, [4] Flo Rida, [5] Fifth Harmony, [6] Taylor Swift, [7] Jesse McCartney, [8] Florida Georgia Line, [9] DJ Pauly D and [10] the Disney Super Buddies puppies. — EUGENE MYERS

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Celebrities Rockat Seacrest Studios



Louis Bell, M.D., chief of the Division of General Pediatrics at CHOP, shares the latest in medical thinking on an important topic: skin care.

Having Fun in the SunB Y L O U I S B E L L , M . D .

ask Dr. Bell

been approved by the FDA, or titanium dioxide and zinc oxide, ingredients that aren’t absorbed by the body. Avoid using sunscreen sprays, because wind may cause them to be applied inconsistently or get in your mouth or eyes. Also be aware that certain plants, including common fruits and vegetables such as lemons, limes, figs, carrots and parsley, sensitize your skin to the sun and can cause a sunburn-like reaction, blistering or a change in color. Wash your hands thoroughly after handling them. When it comes to insect repellant, apply it only on exposed skin (not under clothing) to discourage mosquitoes and other bugs from

choosing you or your kids for a meal. The best-known and most well-studied repellant is DEET. Many parents worry about putting bug spray on their kids; however, DEET has been around since 1957 and is very effective and safe when used as directed. In fact, bug sprays containing up to

30 percent DEET (which provides eight hours of protection) are approved

for children older than 2 months. Use just enough to cover the skin and spray it on your hands to rub it on the child’s face, avoiding the eyes and mouth. Try to avoid putting it on your kids’ hands, since they often end up in their mouths. Common sense precautions such as wearing a hat, light clothing and rash guards can also protect against the sun and bugs, but when it’s just too hot to stay covered, sunscreen and insect repellant will allow you and your kids to safely enjoy the great outdoors.

Now that sunny days are here again, most kids can’t wait to get outdoors. As the temperatures climb, pediatricians at CHOP also see an uptick in concern about sunscreen and bug repellant. What are the most effective ways to use them? Which kinds are the best and safest? CHOP dermatologist Marissa Perman, M.D., follows the latest thinking on the subject, and she emphasizes prevention above all. Sunscreen is most important — and not just in spring and summer, but all year, even when it’s overcast. The American Academy of Dermatology recommends sunscreen with a sun protection factor (SPF) of 30 or higher that is water-resistant for 80 minutes and approved for broad spectrum, which means it will protect against the wavelengths of light that most contribute to skin cancer, sunburns and skin aging. The average adult should use about an ounce — the size of a shot glass — with proportionately less for kids. Lather it on in a thick layer and rub it in well 20 minutes before going outside, to give skin time to absorb it. Whether it’s you or your child outside, reapply sunscreen every two hours, even if you haven’t been swimming, but especially any time you get out of the water. Some people have questioned the chemicals used in sunscreens, particularly oxybenzone, but there’s still little data about their safety, and the FDA is studying them. If you’re concerned, choose sunscreens that contain avobenzone (Parsol 1789), which has

For more of Dr. Bell’s columns, please visit childrensview.org.

Reapply sunscreen every two hours.

Celebrities Rockat Seacrest Studios

cover story


CHOP is the leader in one of the most incredible frontiers of medicine:

TREATING CHILDREN BEFORE BIRTH.

Joseph Agosto, 4 months, with his mother, Catalina


Even though the field of fetal surgery has been

around for more than 30 years, the most common

question about it remains this: “Wait, you can do

surgery on a fetus?” In fact, it is not only possible

to perform surgery on a child still in the womb, but

CHOP’s Center for Fetal Diagnosis and Treatment

(CFDT), opened in 1995, is the largest and most

experienced center in the world, having performed

more than 1,000 fetal surgeries, a quarter of the

prenatal surgeries ever attempted worldwide. Home

to the Garbose Family Special Delivery Unit, the

world’s first comprehensive birth facility exclusively

for mothers carrying babies with known birth defects,

the CFDT offers powerful hope to families from all 50

states and more than 50 countries around the globe.

Every family at the CFDT is on a unique, and

often complex, journey. In the coming pages, you’ll

read about the Agosto family and their five-month,

850-mile odyssey to save their child’s life.

The Smallest Patients

BY JULIE SLOANE

The Diagnosis

It was Jan. 28, 2013, when Catalina Agosto got the best-ever Valentine’s Day present for her husband, Jose: the news that she was pregnant with their first child. She planned to keep it a secret until Feb. 14, but four days later, she gave in to her own excitement. Much to his confusion, Jose came home that evening to find a video camera pointed at him. Catalina presented him with a box labeled “Early Valentine’s Day Gift” wrapped in red tissue paper. When he opened it, a helium baby balloon floated out. A baby? Jose was in disbelief. But then Catalina showed him a paper from her doctor — she had even framed it. Once he got over the shock, the couple hugged, shed a few happy tears and started calling their families to share the good news. At their 12-week ultrasound, they finally got to see their little bean. They could not have been more excited. Catalina began to make a list of the baby things they would need. At week 19, they went together to their anatomy ultrasound. The technician told them it was a boy, but then she got quiet. She left the room and a doctor came in with some bad news: There was something irregular on the baby’s lung. She referred them to a maternal fetal medicine specialist nearby their home in Jacksonville, Fla. For several days, the Agostos waited nervously for the appointment, alternating between the joy of having a son and the heartbreak of potentially losing him. The specialist told them their son had a congenital cystic adenomatoid malformation, or CCAM. The Agostos, like most people, had never heard of it. A CCAM is a type of growth on the lung. What makes it so dangerous is that if it grows large enough, it begins to take over the chest cavity, pushing the heart to the side. That in turn makes the heart unable to fill, backing up fluid. In severe cases, the fetus goes into heart failure, which will be fatal to the baby and even can be life-threatening to the mother. Doctors in Florida presented a stark set of options. If they wanted to terminate, they had until 24 weeks. That was out of the question for the Agostos. Alternately, they could try a course of steroids to stabilize or shrink the tumor. “The way he was talking, the reality sounded negative,” says Catalina. “You get the steroid and it works or it doesn’t. That was our last hope in a way.” It didn’t work. The tumor kept growing. The doctor repeatedly advised them to terminate. But when the Agostos refused, the doctor brought up another possibility: a hospital in Philadelphia with expertise in CCAMs. Fetal surgery — something else the Agostos had never heard of — might be an option. They were willing to try anything. Catalina placed a call to the Center for Fetal Diagnosis and Treatment (CFDT) at The Children’s Hospital of Philadelphia.

The Journey to Philadelphia

It was May 30 when Catalina dialed the number and connected with nurse coordinator Susan Spinner, R.N., M.S.N. Together, they reviewed the diagnosis and Spinner explained that CHOP is the most experienced center in the world for treating babies with CCAM before birth. “One of the most important things we do in the beginning when we get the first call,” says Spinner, “is just to let the

mother know that somebody is there for her.” It was Thursday, and Catalina needed to be in Philadelphia on Monday. The baby’s lesion was already far advanced. Catalina had never been to Philadelphia, and Jose, who had just started a new job, couldn’t take time off work to accompany her. Jose’s mother, who lives in Puerto Rico, volunteered. She and Catalina had never even met before. Last-minute flights are expensive, and so Spinner turned to the Addison’s Hope for Fetal Families Fund to fly both Catalina and her mother-in-law to Philadelphia and book them a hotel for those first few days. This fund was started by Mary and Jed Kelly, whose daughter, Addison, had lifesaving fetal surgery at the CFDT in 2006. (The Kellys are also honorary chairs of this year’s Daisy Day Luncheon on May 8, which will benefit the CFDT.) The fund is used in exactly situations like these — to pay for travel expenses that might otherwise be a barrier to a family getting the care they need at the CFDT. Catalina just wanted to get to Philly as quickly as possible and find out if there was any hope for the baby they had decided to name Joseph.

Making a Plan

Tuesday, June 4, was a blur to Catalina. As with all new patients to the CFDT, she underwent a full day of tests and consultations, including an ultrafast fetal MRI (which was developed at CHOP), a detailed high-resolution ultrasound, a fetal echocardiogram and genetic counseling. All of her tests took place in one central area — a deliberate effort to simplify a long day. At the end of the day, Catalina and her mother-in-law met with a large part of her core team: Spinner; maternal fetal medicine specialist Julie Moldenhauer, M.D.; and pediatric surgeon Holly Hedrick, M.D. Together, they reviewed Catalina’s diagnosis and her options. They would try another course of steroids, they told her, to see if the tumor might shrink. If it stabilized, perhaps it could be removed after Joseph’s birth. But they warned her it was already pretty large, and the baby already had fluid buildup in his abdomen, a sign of distress.


An ultrasound image of the Agostos’ baby taken at 19 weeks gestation gave the first indication that something was wrong.cover story <

If that progressed further, surgical options would be on the table. While survival rates are only about 60 percent, it’s something they would consider if they had to. “It’s always a challenge to figure out when to intervene,” explains Hedrick, who has 15 years of experience with fetal surgery. “There is a balancing act to intervene only when absolutely necessary, deciding when no other option will work and soon enough to make a difference. You have to be watching very carefully. Timing is everything.” That meant Catalina would have to remain in Philadelphia until Joseph was born. She had packed for a week or two but was now facing a months-long stay at the Ronald McDonald House. Catalina took the steroids and came to CHOP for appointments every other day. But the tumor only grew. Fluid accumulated in Joseph’s belly, skin and scalp. His heart was being pushed to the right side of his chest. On June 21, Catalina sat down with her entire team and learned that it was time for fetal surgery. It was so urgent, in fact, that it had to be done the very next day. She would be 24 weeks and six days pregnant. With a survival rate of about 60 percent, Catalina needed to be prepared for some pretty awful possibilities. If Joseph died during surgery, she might wake up from the surgery and not be pregnant anymore. Or Joseph might need to be delivered and might live only a short time. How would she want to spend

that time with him? Would she want to hold him? To have him baptized? She cried when she heard the news, but she accepted that this really was Joseph’s last hope.

The Surgery

Catalina arrived at CHOP at 6 a.m. on Saturday, June 22, feeling numb and scared. After receiving IVs and an epidural, she was wheeled into the operating room. The anesthesiologist asked her to count to three. She didn’t even make it that far. The next thing she knew, she was waking up. Meanwhile, the team of almost a dozen people — surgeons, specialized fetal operating room and obstetric nurses, a fetal cardiologist, anesthesiologists, and maternal-fetal specialists — sprang into coordinated action. This would be an “open” fetal surgery, meaning that there would be a long horizontal incision across Catalina’s lower abdomen, the uterus would be opened and part of Joseph’s body would be exposed so that the surgeons could remove his CCAM. Once finished, they would return him to his mother’s womb, replace his amniotic fluid with a sterile solution, sew up their incisions, and with any luck, he would return to his mother’s belly for 13 more weeks.


Each fetal surgery involves a large team. Here, four surgeons are involved in the procedure, including Hedrick (right).

The Center for Fetal Diagnosis and Treatment will be the beneficiary of the 58th Annual Daisy Day Luncheon on May 8, 2014, at the Hyatt at The Bellevue in Philadelphia.

cover story


Catalina holding baby Joseph just days after his birth

N. Scott Adzick, M.D., CHOP’s Surgeon-in-Chief and director of the CFDT (who is one of the founders of the field of fetal surgery), assisted Hedrick with the surgery. As complex as they are, these are fast procedures — by design. Fetal surgeries must be done quickly to minimize risk. Hedrick estimates that fewer than 30 fetal surgeries for CCAM removal have ever been done, and most of those have been done at CHOP. After all the incisions were made, Joseph’s tiny left arm was pulled out into the open, exposing his left chest. An IV was put into his tiny hand, and a pulse oximeter was wrapped around his tiny hand and covered with sterile foil. A pump maintained warm fluid levels around Joseph. A cardiologist was constantly monitoring Joseph’s heart, while other physicians constantly monitored Catalina and Joseph. The team was prepared for the worst: Doses of powerful resuscitation drugs were nearby on the table, already measured for Joseph’s 1.8-pound body weight, in case his heart stopped beating during surgery. Surgeons removed Joseph’s CCAM — while saving the

compressed but normal portion of the left lung — and then layer by layer, they stitched closed both child and mother.

Pregnancy, Round 2

The surgery had been a success. The doctors had removed a CCAM the size of an adult fist. “I can’t imagine how something so big could be in someone so small,” says Catalina. After four days in the Garbose Family Special Delivery (SDU), Catalina returned to the Ronald McDonald House on strict bed rest to help prevent preterm labor. She would Skype with Jose every night and spend the day watching TV and chatting with other patient families. Her weekly ultrasounds at CHOP revealed that the fluid around Joseph’s scalp and belly was disappearing. What had been a tense situation was now a surprisingly uneventful wait-ing game. The doctors hoped Joseph would stay put until 37 weeks, when he could be delivered by cesarean section. And he did. At 37 weeks and one day, Catalina reported to the SDU.

To learn more and buy tickets, visit daisydayluncheon.org.

To see more of the Agostos’ personal photos and to learn more about fetal surgery, visit childrensview.org.


constant beep of monitors. She would pump and store breastmilk, which was being fed to Joseph through a tube into his stomach. After 34 days of oxygen, Joseph was breathing on his own and taking a bottle by mouth. He would cry only if he needed food or a diaper change. Soon, Rose found herself doing less and less medical care. “It was nice to see the transition from Catalina just sitting there to pretty much being an independent mom, with us there only as backup,” says Rose.

Going Home

Their journey at CHOP, which started on May 30, ended on Oct. 26 in the best way possible: The Agosto family of three went home together. Jose drove through the night to pick up his wife and son so that Joseph wouldn’t have to endure the stress of a flight. Joseph slept the whole way home. On his first day in Florida, He met both of his grandfathers and Skyped with his uncle in Colombia. Joseph’s doctors in Florida have given him a clean bill of health. There is even good news about his partial left lung. “The amazing thing about babies is that even though we took out some lung, the remaining lung will grow to fill the space,” says Hedrick. “And that’s not true with older children or adults.” There are small reminders of his surgery — a white dot on his left hand where the IV had been placed during surgery, and of course a long linear scar across his left chest — but his story continues to amaze all who meet him. “He’s gone through so

much and he looks like a normal baby,” says Catalina. At 4 months old, he weighs 12 pounds and will soon transition to solid baby foods. In April, he will return to CHOP for a 6-month checkup with the Pulmonary Hypoplasia Program. Return visits not only help ensure that Joseph is getting all of the services he needs but also help give future fetal surgery families a better idea of what to expect. The Agostos know how lucky they have been and how many families don’t have as happy an outcome. But despite 60/40 odds, they never lost their optimism. “I never really thought about him not making it,” says Jose. “I was really positive the whole way through. Especially when Catalina went to Philly and CHOP. That was our last hope, but I knew she was in good hands and that he was going to be fine.”

Happy Birthday, Joseph

Jose flew up to Philadelphia to be there for the birth. The enormity of the day hit Catalina just before the procedure, and she began to cry and shake uncontrollably. Her nurses held her hands as she got the epidural, and she went to the OR. At 9:56 a.m. on Sept. 16, Joseph Manuel Agosto was born, weighing 5 pounds, 10 ounces and measuring 18 inches. He was the 1,573rd birth in the SDU. Doctors hurried Joseph into an adjoining neonatal stabilization room to make sure he was OK. As they assessed him and brought him to his incubator, Jose finally got to see his son. That’s when Joseph opened his eyes. “We made eye contact and that was the greatest moment of my life so far,” says Jose. After Catalina got a quick peek at him in the OR, Joseph headed straight to the Harriet and Ronald Lassin Neonatal/Infant Intensive Care Unit (N/IICU) while obstetricians closed Catalina’s C-section incision. In the N/IICU, Joseph was being hooked up to various monitors. He also received supplemental oxygen as he learned to breathe, and at one point, his little face was covered by a mask. Jose had planned to stay one week, but he extended the visit to two. They had hoped to take Joseph home in that time, but he wasn’t ready. “The baby calls the shots in these cases,” says N/IICU nurse Annabelle Rose, R.N.-N.I.C., one of the neonatal surgical registered nurses who often cared for Joseph. “We can only push him as far as he’s ready to go.” Every day, Catalina would visit Joseph, taking only Sunday off. She would sit in his dimly lit three-walled pod, listening to the

Catalina and Jose with 4-month-old Joseph near their home in Jacksonville, Fla.

THIS PAGE and OPPOSITE BOTTOM: Niels, 10, and his brother Lachlan, 7

OPPOSITE TOP: The Strautnieks with their doctor, Gihan Tennekoon, M.B.B.S., M.R.C.S.

Alternative Energy

This is the first of “A Million Stories of Hope,” introducing some of the countless children who will benefit from the Buerger Center. To learn more about making your mark on this important project, please visit chopbuildinghope.org.


Alternative EnergyMitochondrial disease isn’t slowing down brothers Niels and Lachlan — thanks to their CHOP team.

BY EUGENE MYERS


The brain is the biggest consumer of energy in the body, and each boy has suffered from distressing neurological problems: Niels’ IQ dropped significantly from kindergarten to first grade, he began acting up, and he wasn’t able to read and write, while Lachlan also at times has lost the ability to speak. One day Hardy noticed that after receiving a steroid to help him breathe, Niels’ intellect returned, so his doctor, neurologist Gihan Tennekoon, M.B.B.S., M.R.C.S., prescribed it to both boys long term. Although initially this was an unorthodox treatment, later they were diagnosed with a form of epilepsy that responds to steroids. The improvement was immediately apparent. Niels is back to being as smart, talkative and sarcastic as any fourth-grade boy. Lachlan can talk again, and he’s relearning reading and math. “In medicine, you have to listen to the parents as much as anything else. That’s basically what my diagnosis and treatment plans rely on, because they see their kids every day,” says Tennekoon, who is still learning about the boys’ complex condition even while treating them. Medication and infusions of immune-boosting antibodies have ended their monthly visits to the emergency room, and a “mito cocktail” of supplements, along with eating every two hours, maintains their energy so that Niels can be a soccer star and Lachlan — who once spent most of his day horizontal — can now boogie board and dig massive holes on the beach. Mitochondrial disease is typically degenerative, and in Niels and Lachlan’s case no one knows how or when it will get worse. “Theywould be dead today if not for CHOP,” Hardy says. “We are not guaranteed tomorrow, ever, so our motto is we do what we can, when we can. And we make sure we laugh a lot.” Visiting 13 specialists, some as often as six times a year, will be much easier when they are all in one building — the Buerger Center for Advanced Pediatric Care — and it will also facilitate communication among their doctors. The family is so looking forward to the opening of the Buerger Center that Niels is trying to raise $50 million for it. (He’s at $24,300 and counting!) “The center means so much to me as a mom of two boys for whom time is precious, when every quality moment counts,” says Hardy.

Watch Niels and Lachlan’s fun family videos at childrensview.org.

ANYONE WATCHING 10-YEAR-OLD NIELS STRAUTNIEKS zigzagging down a soccer field would never imagine that not long ago, he was often too tired to sit up. Niels has a chronic problem with the way his body makes and uses energy, causing him to suffer from diabetes, epilepsy, immune deficiency, and a host of other dangerous conditions that require a whopping 13 CHOP specialists to keep him healthy. “When Niels was born, I knew by the second night that something was wrong. He was so incredibly uncomfortable and fussy,” his mother, Meredith Hardy, says. But Niels’ doctors in Charlotte, N.C., dismissed Hardy’s concerns as colic or first-time parent jitters. Niels had constant sinus infections, gastrointestinal problems, reflux and more. When his brother, Lachlan, now 7, showed the same weird symptoms — and his breathing troubles almost killed him — it was a wake-up call for Meredith and her husband, John Strautnieks: They needed help. Hardy consulted several specialists, but none believed that Niels and Lachlan were seriously ill — the boys could be miserable and in pain one moment, happy and smiling the next. A friend gave Hardy a U.S. News & World Report survey ranking CHOP as the top pediatric hospital, and she thought it might be the answer to their prayers. Serendipitously, 10 days later, Strautnieks landed a job in Philadelphia. By the end of the month, the family had relocated. “At CHOP, I was immediately listened to, in a way that went beyond anything I had experienced,” Hardy says. When Niels developed type 1 diabetes in kindergarten, the boys finally got a diag-nosis: mitochondrial disease. Mitochondria are the power plants of the body, tiny cellular structures that convert food and oxygen into energy. Douglas Wallace, Ph.D., director of CHOP’s Center for Mitochondrial and Epigenomic Medicine, is an internationally renowned renowned expert on mitochondria who has made the most important discoveries in the field. When mitochondria don’t make enough energy for the body, the effects are catastrophic on multiple organs. More and more illnesses are being attributed to mitochondria, but so far what Niels and Lachlan have has never been seen before. “Strautnieks’ disease,” the family jokingly calls it.

THIS PAGE: Brandon, today at 24

OPPOSITE: Oncologist Jean Belasco, M.D., with Brandon (top), and Chaplain Laura Palmer, who visits Brandon daily when he is at CHOP (bottom)16 l Children's vlew l Spring 2014

Fighting an aggressive brain tumor is a team effort.BY MARK TURBIVILLE

YOU MAY HAVE READ THE BOOK OR SEEN THE movie with Sandra Bullock called The Blind Side. A gentle giant overcomes all obstacles to become a starting NFL player who protects quarterbacks for a living. That was going to be Brandon Terrance: Beat the odds to make it into the pros. A 6 4́ ,̋ 300-pound left guard. A mover of men. A rock. He was well on his way, too, winning a championship at Philadelphia’s West Catholic Preparatory High School in 2009 and earning the starting nod at Indiana University of Pennsylvania. Then the headaches started. Fierce, burning, vivid pain. His vision blurred and insides turned with nausea. He was 21. Brandon’s doctor ordered a CT scan, then sent him to the emergency room. It was October 2011. By the new year his world had turned upside down.

Brandon’s Packof Lifesavers

Spring 2014 l Children’s vlew l 17

InoperableThere’s no two ways about it: Brandon is big. Muscles on muscles, he could bench-press 400 pounds. Yet he’s laid-back, quiet and understated, and the most responsible one in the room. If you were playing a sport where the other team wanted to hit you, Brandon is the guy you’d want in front of you. But now there was a tumor on his brain that they said was inoperable. His doctors didn’t know what type of tumor it was, so they didn’t know how to fight it. Removing a piece would be tricky. At a conference, his doctor had met a wunderkind pediatric neurosurgeon named Phillip “Jay” Storm, M.D., who specialized in tough brain tumors. Storm happened to work nearby at CHOP. Brandon’s doctor asked if Storm would come and help him get a sample of the tumor, and he did. The diagnosis came back on his mom’s birthday: glioblastoma multiforme. “A death sentence,” they said.

A Big KidBrandon’s mother, Tina Walters, is half his size and larger than life. She talks in stories and will leave you in stitches. And she loves her son fiercely. Walters would not accept that there was nothing to be done. She pressed for action, for options. Brandon’s doctor offered a long shot. “He said, look, Brandon’s bigger than most adults, but he’s basically a big kid,” Walters says. “Take him to CHOP. That’s when he put me in touch with Jean Belasco and everything changed.” Belasco, an oncologist at CHOP, looked at his charts. She thought they could fight it. But the tumor had grown; it had long, sticky fingers wrapped around Brandon’s brain stem. They would have to take it out. And Belasco knew just who could do it. “Most of the doctors we’d seen before CHOP spoke to us about what could go wrong,” says Walters. “They’d say, ‘This will be a rough road.’ That wasn’t what Dr. Storm said when he came in that room. The confidence he had. He said I’m going to go in this way, and I’m going to get it out.” Storm did. That big, ugly spider of a tumor was cut down to a speck no bigger than the tip of a fingernail.

The DreamStorm and Belasco weren’t the only heroes in Brandon’s story. When Brandon sees Laura Palmer, he crumples his large hand into a fist, and in return Palmer gently knocks her own petite knuckles against his. “He’s teaching me how to be hip,” Palmer says with a laugh, explaining the fist bump. During Brandon’s year at CHOP, Palmer, one of CHOP’s chaplains, was a constant, holding hands and praying with his family. “Laura is in our pack of lifesavers,” says Walters. “Dr. Belasco and Dr. Storm helped heal Brandon’s body, and Laura has been there for us to help heal his soul.” “Brandon is one of the reasons I do what I do, why I love what I do,” says Palmer. “Being in oncology can be terrifying. But I wouldn’t be here if I didn’t believe love is stronger than cancer.” This past January, Brandon and his family got news that the tumor was growing again. But he is fighting and has his faith. Despite his ordeal, or because of it, Brandon still wants to be a professional protector shielding others from the hard hits in life, only not as a football player but through service in the church. “I was going to be in the NFL,” says Brandon softly. “I was going to make it happen. But now I look at life differently. I see so much more than I did playing football. I want to help others fight now. That is my dream.”

To learn more about pediatric brain tumor treatment and research at CHOP, please visit childrensview.org.

18 l Children’s vlew l Spring 2014

ONE FOOT IN FRONT OF THE OTHER

THIS PAGE: Ashley, 13, practices her walk in the GIANT Food Stores Physical Therapy Gym.

OPPOSITE: Jessica Engle, P.T., D.P.T., works with Ashley to help her smoothly transition from seated to standing.

After sudden paralysis, Ashley, 13, is learning to walk again with the help of CHOP rehab therapists, positive thinking and a lot of hard work.BY EUGENE MYERS

IN OCTOBER, 13-YEAR-OLD ASHLEY BROADDUS was in writing class at school when she felt pain in her lower back. In the nurse’s office, the pain increased and she suddenly lost feeling from the chest down. Ashley’s mother, Yvonne Farrell, arrived to find her crying and unable to move her legs. “We called the ambulance. I stood there for a minute talking to her dad, wondering where to take her,” says Farrell. “I was thinking the closest hospital. And he said, ‘No, CHOP is the best.’ So we came to CHOP.” There, they learned that Ashley had an arteriovenous malformation, a tangle of abnormally formed blood vessels, in her spine — which had ruptured. After surgery to stop the bleeding, some feeling gradually returned to Ashley’s legs. Then the hard work began: daily physical therapy (PT) to master basic motor skills like standing and walking, and occupational therapy (OT) for activities like getting dressed and cooking. “They taught me how to get up from bed in the morning, how to transfer from the bed to the chair, how to roll the wheelchair,” Ashley says. “And it was kind of hard, because you need a lot of upper-body strength.” After a 10-week stay, she went home on Dec. 24, but she returns to CHOP twice a week for outpatient PT and OT. When she arrives at the GIANT Food Stores Physical Therapy Gym in Children’s Seashore House for this afternoon’s PT session, she’s smiling and energetic — even after a full day of school. She has a wheelchair, but most of the time, she uses it as a coat rack. Even if movement is slow-going, she is determined to walk using a walker. Therapists greet Ashley enthusiastically, complimenting her hair and outfit. She is a vibrant, expressive teenager, down to the colorful “Flower Power” design on her leg brace and the One Direction stickers adorning her walker. Ashley and Jessica Engle, P.T., D.P.T., chat like old friends while Ashley pedals a stationary bike to build strength in her weaker right leg; Engle nudges Ashley’s right foot up and over with each rotation. “One of these days you’re going to get it around by yourself,” Engle says. As they move from exercise to exercise, Engle keeps up a steady stream of encouragement. “Push, push, push!” she urges, while Ashley does leg presses. “I like how straight you are. Can you feel the difference?” Ashley nods, smiling. They abandon the walker and practice walking on crutches —

the next phase of her recovery. As they walk around the gym, Engle plays music on her iPod. “We always have to have One Direction playing while we’re walking,” Engle says. “You’re doing a perfect job,” she tells Ashley. “Just remember: One crutch, leg. Other crutch, leg. It’s not a race.” Ashley knows about races. Before all this, she ran the 100-meter dash on her school’s track team. She also won a ballroom dancing

contest and hoped to become a cheerleader this year. She wanted to be a model or a lawyer when she grows up. Now she wants to be a physical therapist. Ashley makes it to the end of a short hallway and back again on crutches, twice — the farthest she has walked on crutches so far. Engle says it’s important to keep pushing her with each session so that her muscles keep improving. She makes another breakthrough as she practices going up and down stairs. Engle gives her a high five: “Awesome, Ashley! You’re rocking this!” Ashley wraps the PT session by standing up and sitting on a low bench, a task that used to require no thought or effort at all. She’s tired, but the smile has rarely left her face in the last hour. “What’s so great about her is that she has such a positive attitude about everything. She’s been through so much, but I haven’t heard her complain one time,” Engle says. At first doctors warned that Ashley might not walk again, but the family is optimistic. “They said Ashley is changing every day, so they really don’t know,” Farrell says. “But we are hopeful.” All Ashley needs to keep going is the hope that she will walk and run and dance again. And like her favorite band, she’s focused on moving in only one direction: forward.



SIGNATURE EVENTSvolunteers in philanthropy

The PhiladelphiaAuto Show BlackTie Tailgate On Feb. 7, 4,000 guests attended the 2014 Black Tie Tailgate at the Pennsylvania Convention Center in Philadelphia. The event raised more than $400,000 to benefit the Division of Neonatology. Held on the eve of the Philadelphia Auto Show opening, the Black Tie Tailgate Preview Gala is produced by the Auto Dealers CARing for Kids Foundation, the charitable arm of the Automobile Dealers Association of Greater Philadelphia. Guests enjoyed drinks, dancing and cuisine while previewing the 2014 Auto Show.

The Women’s Committee of The Children’s Hospital of Philadelphia Holiday Boutique On Dec. 5 and 6, this kickoff to the holiday shopping season drew more than 750 people to the Merion Cricket Club in Haverford, Pa., where they browsed the beautiful wares of 26 vendors from across the country. Trion was the presenting sponsor, and the event raised more than $340,000 for patient care, research and education programs at CHOP.


SIGNATURE EVENTSvolunteers in philanthropy

Cheers for CHOP On March 1, Valley Forge Casino Resort in King of Prussia, Pa., was the setting for Cheers for CHOP, an event hosted by the Friends of CHOP.This celebratory evening with 400 guests includedentertainment, cocktails and an incredible silent andlive auction. The event raised more than $415,000 for research at the Center for Fetal Diagnosis and Treatment as well as the Buerger Center for Advanced Pediatric Care.

“All In” for ids Poker Tournament The Mandarin Oriental Hotel New York was once again the setting for the “All In” for Kids Poker Tournament, in partnership with the World Poker Tour Foundation, which drew 300 guests and raised $725,000 for pediatric palliative care. The honorary chairs of the evening were Daniel Shak and family. The tournament, held on Nov. 14, was hosted by poker legend Phil Hellmuth Jr.

Giroux & Friends Charity Bowling Event Philadelphia Flyers players, led by team captain Claude Giroux, traded their skates for bowling shoes as they gathered for an exciting evening on March 3 that included bowling, food, drinks, a silent auction and prizes. The event, held at North Bowl in Philadelphia, raised funds for CHOP.


COMMUNITY EVENTS FALL 2013 –WINTER 2014volunteers in philanthropy

Scarnati/Cawley 100 Sept. 13-15, Gettysburg, Pa., to Annville, Pa. • Senate President Pro Tempore Joe Scarnati and Lieutenant Governor Jim Cawley hosted a three-day, 100-mile charity bike ride to raise money for three children’s hospitals in Pennsylvania. The event raised more than $33,000 for the Cancer Center at CHOP.

Cara’s Sweethearts Beats from the Heart Sept.14, Philadelphia Firefighter’s Union/IAFF Local 22 Banquet Hall, Philadelphia • This evening of live music, sweepstakes, food and drinks raised $5,000 for the Cardiac Social Work Emergency Fund.

10th Annual Christopher’s Cure Golf Tournament Sept. 27, Downingtown Country Club, Downingtown, Pa. • This day of golfing, lunch, dinner and a silent auction raised $40,400 for the Christopher’s Cure Fund, which supports research into musculoskeletal tumors.

1 4th Annual Golfing for Angels Outing Sept. 28, The Club at Shannondell, Audubon, Pa. • This golf tournament, which also included dinner, an auction and prizes for top finishers, raised $13,495 for the Sibling Care Program at CHOP.

ATA 5K Sept. 29, ATA Martial Arts of Royersford, Royersford, Pa. • More than 370 runners and walkers raised more than $2,000 for cancer research.

2nd Annual Squash Strokes Sept. 29, Germantown Cricket Club, Philadelphia • Singles and doubles squash players competed for charity, raising $3,309 for pediatric stroke research.

Alex’s Ice Skate and Donate Mitzvah Project Oct. 5, Philadelphia Skating Club & Humane Society, Ardmore, Pa. • This ice skating event, organized by Alex Krauss as a bar mitzvah project, raised more than $2,000 for the Cancer Center.

7th Annual Ranger for a Cure Golf Outing Oct. 5, Jeffersonville Golf Club, Jeffersonville, Pa. • Nearly 70 golfers came out to support Ranger for a Cure, together raising $3,100 for the Cancer Center.

Spike Down Cancer Oct. 9, The Academy of Notre Dame de Namur, Villanova, Pa. • The Academy of Notre Dame de Namur volleyball teamed up with the Miriam’s Kids Research Foundation for a volleyball match that raised $1,800 for brain tumor research.

Avery’s Carnival Oct. 20, Standing Ovation School of Dance, Brick, N.J. • With rides, a bouncy house, a rock wall, a video game truck, face painting, food, music and more, this carnival raised $10,000 for the Buerger Center for Advanced Pediatric Care.

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HootaThon Nov. 8, Temple University, Philadelphia • Temple students held a 12-hour dance marathon, ultimately raising $60,005.75 for Children’s Miracle Network at CHOP.

NXTsports Philly Charity Showdown Nov. 15, Citizens Bank Park, Philadelphia • This first ever lacrosse game played at Citizens Bank Park featured 10 of the nation’s elite lacrosse clubs and high school teams. It raised $30,000 for Minds Matter: Improving Pediatric Concussion Management.

Lehigh University Dance Marathon Nov. 16, Lehigh University, Bethlehem, Pa. • Students from Lehigh University came together for an all-night dance marathon, which raised $39,311.54 for Children’s Miracle Network at CHOP.

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Sweet Caroline 5K Oct. 20, Central Bucks High School South, Warrington, Pa. • Students, staff and their families ran and walked in remembrance of classmate Caroline Gallagher, raising $9,051 for the Cardiac Center.

Extra Life Gaming Marathon Nov. 2, various locations • Local gamers on a mission to play video games and heal kids participated in a gaming marathon that raised $77,690 for Children’s Miracle Network at CHOP.

Kids Kicking Cancer Nov. 5, Mondauk Common, Ambler, Pa. • This soccer tournament for kids in grades two to eight raised more than $3,000 for cancer research.

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Miles for Migraine in Your Town – Philadelphia 2013 Nov. 17, Philadelphia Marathon, Half Marathon & 8K race, Philadelphia • Team Miles for Migraine Philadelphia assembled a group of athletes who not only ran but also raised $9,033 for migraine research.

Kohl’s Cares Check Presentation Nov. 18, St. Francis de Sales School, Philadelphia • Kohl’s, a longtime partner of CHOP’s, donated $429,051 to the Kohl’s Injury Prevention Program.

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Philly-opoly Launch Event Nov. 19, The Children’s Hospital of Philadelphia • The Philly edition of Monopoly was unveiled at CHOP. Five dollars from each game sold (up to $50,000) will be donated to the Buerger Center for Advanced Pediatric Care.


UPCOMING EVENTS

COMMUNITY EVENTS FALL 2013 –WINTER 2014 c on t inu ed

volunteers in philanthropy

Conestoga Bank Check Presentation Dec. 19, LOVE Park, Philadelphia • Conestoga Bank and its customers donated $10,000 to CHOP from the unused balances on their Sharing Cards.

Painting with a Purpose Jan. 19, Painting With a Twist, Skippack, Pa. • A charity painting class, the event brought together 50 people and raised $2,445 for Juliet’s Cure Mito Disease Research Fund.

Monday, June 16, 2014 Seaview Golf Resort, Absecon, N.J.

golf.chop.eduFor more information, please contact Kevin McMahon at 267-426-6517 or [email protected].

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The Kick Leuk Foundation Check Presentation Jan. 23, The Children’s Hospital of Philadelphia • In its inaugural year, The Kick Leuk Foundation donated $52,013.08 to fund research in pediatric acute myeloid leukemia (AML). The funds were raised through private donations as well as a golf tournament and 5K trail run/walk.

2014 Golf Classic

The

Chi

ldren

’s Hospital of Philadelphia®

58th Annual

DAISY DAY

LuncheonThursday, May 8, 2014Hyatt at The Bellevue

Benefiting the Center for Fetal Diagnosis and Treatment at The Children’s Hospital of Philadelphia

daisydayluncheon.org

For more information, please contact Sonia Ocasio at 267-426-6477 or [email protected].

Chair: Nancy A. Wolfson

Honorary Chairs:Mary and Jed Kelly

BUILDING HOPE is our campaign to raise money for

CHOP’s new Buerger Center for Advanced Pediatric Care,

the finest pediatric outpatient facility in the world.

You can have your name inscribed in the Buerger Center

in appreciation of a donation of $500 or more.

Make your mark — visit chopbuildinghope.org to learn more.

A Million Stories of Hope.Twelve Stories of Glass and Steel.

Please recycle. Children’s View is printed on 55 percent recycled paper and 30 percent post-consumer waste paper.

We invite you to link your life story with CHOP as it continues its mission to help children like Isabella,

who was born prematurely — at only 25 weeks — and spent her first seven months at CHOP.

By naming CHOP in your will or trust, or as a beneficiary of a retirement plan,

you won’t affect your current cash flow, and you can change your decision at any time. No gift is too small,

and we welcome you to make your future gift in honor or memory of a loved one.

To create your own legacy of hope and healing, contact Tom Yates, director of planned giving: 267-426-6472 or [email protected].

LEAVEA LEGACY

of Hope and Healing

GiftofChildhood.org

Gift of Childhood.org/plannedgiving

Isabella | Age 3

children's view spring 2014

Documents

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lung tumor

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inoperable brain tumor

productive lives