She thought it had to be a stomach bug. But as the night passed, Kristi Ouimet’s 4-month-old son, Matthew, grew worse, so she packed him into his car seat and headed for the local hospital. It took the emergency room nurses several tries to draw blood because Matthew was so dehydrated.

“When the doctor came back with the lab results, I could see in his face that something was terribly wrong,” recalls Kristi.

Kristi and her husband, Kelly, learned that Matthew was in end-stage renal failure from a liver disease called primary hyperoxaluria type 1. His kidneys were loaded with stones and no longer functioning. He needed a new liver and kidney.

Matthew was rushed by ambulance to UCSF Benioff Children’s Hospital San Francisco, which is a leader in kidney and liver transplants.

Over the 23-month wait for donor organs to become available, Kristi would wake up at 4 a.m., six days each week, to take Matthew from their home in Antioch to our San Francisco campus, where he received four hours of dialysis treatment before they made the long trek back home.

After three close calls, Matthew’s family received the welcome news that a donor match had finally been found.

On the night of his surgery, Kristi kissed Matthew and held his hand until he was fully sedated in the operating room. John Roberts, MD, chief of transplant surgery at UCSF, and Peter Stock, MD, PhD, surgical director of the pediatric renal transplant program at UCSF Benioff San Francisco, spent almost 13 hours transplanting Matthew’s new organs.

“The hospital saved my son’s life,” shares Kristi. “We formed incredible bonds with world-renowned surgeons, doctors, nurses, specialists, aides, counselors, social workers, cooks, security guards, and janitors—none more important than the other. All were genuine and made us feel like family.”

Following a long recovery with its share of highs and lows, Matthew is now a healthy 5-year-old with a heart-warming smile and big, beautiful eyes. The Ouimets have gone public with Matthew’s journey to raise awareness about the importance of organ donation. Currently more than 123,000 men, women, and children are awaiting organ transplants to save their lives.

The Greatest Gift

Happy Anniversary, Mission Bay!1

A newsletter for friends and supporters of UCSF Benioff Children’s Hospitals

Connections

Honoring Quincy’s Wish

Welcome Erin Hickey

Healing Art of Origami2New Center for Fetal Medicine

RE/MAX Miracle Homes3Medicine as a Second Act

Leave a Legacy for Kids

A Starry Night

An Evening in the Meadow4

INSIDE THIS EDITION

SPRING 2016

The Greatest Gift Matthew, Age 5

Matthew Ouimet was born with a genetic condition that affects both his liver and his kidneys. In 2013, he underwent a rare double transplant surgery, and despite a long road to recovery, continues to surprise everyone with his strength and spirit.

“The hospital saved my son’s life.

”—Kristi Ouimet

Happy Anniversary, Mission Bay!

February 1, 2015, is a date that Nancy Price and Vladimir Ramirez will always remember. Their son, Paolo, made history that Sunday when he was the first baby born at the new UCSF Benioff Children’s Hospital San Francisco, which is part of UCSF Medical Center at Mission Bay.

Paolo is now 1 year old, as is the hospital in which he was born. Today, both are thriving.

“It really is the healing environment we intended it to be,” says Kim Scurr, the children’s hospital’s vice president of operations. “And I believe that is reflected in the amazing growth we’ve experienced in such a short amount of time.”

Indeed, virtually every unit at the new children’s hospital, from the pediatric intensive care nursery to medical surgery, is 80 to 85 percent occupied. With more than 400 helicopter landings and over 13,000 Emergency Department visitors in the last year, this new facility has quickly become a vital part of the community.

“Not only are we offering state-of-the-art patient care, but we also want children to come in and feel comfortable, to know it’s a place where they belong and that it’s not scary,” said Cindy Lima, who served as the executive director of the UCSF Mission Bay Hospitals Project.

Among the most popular features of the new hospital are the in-room multimedia walls, customized lounges and activity rooms, plus the more than four acres of green space. Together with a host of other elements, we are providing our patients with a child-centric healing environment by giving kids the chance to be kids, even in the hospital.

A young patient enjoys the playful details that add a dose of fun to the hallways at our Mission Bay campus.

THE HEALING ART OF ORIGAMIBernie Peyton has a healthy addiction to paper. It’s not that he uses it for excessive writing or drawing. Instead, the former field biologist manipulates it into bears, kangaroo rats, snakes, and other creatures by practicing origami.

Bernie’s passion for paper is not just a hobby. His elaborate origami sculptures are exhibited in permanent collections around the world.

This success, shares Bernie, is nothing compared to the smiles he gets from patients and their families during his weekly visits to teach the craft at UCSF Benioff Children’s Hospital Oakland.

Bernie has known of the therapeutic powers of origami since he was a young boy. He grew up with a sister who had cystic fibrosis and would spend hours sitting by her bedside, folding amazing creations that would help distract from her illness.

At first, folding a small, square piece of paper might not seem as if it would have much medical benefit. But for patients who feel scared, nervous, or upset during a hospital visit,

art can provide a bridge that allows them to express their thoughts and feelings and process what they may find difficult to share in words.

“When I teach classes, I try not to intervene as students learn the process,” Bernie says. “It is especially important for children who are ill to experience the joys of achieving something on their own.”

Bernie recalls a patient named Sam whom he met during one of his afternoon shifts. The injured teen was struggling with his medical condition and refusing visitors. Bernie

persevered and told Sam that he wanted to show him what he could do. He gave the boy a square piece of paper and watched as he carefully folded it perfectly in half.

Fifty minutes later, Sam completed a complex bird model. A smile erupted on Sam’s face while Bernie was choking back tears. The boy showed it to his roommate, then to his nurse. During Bernie’s shift the following week, he learned that Sam had completely warmed up to the hospital staff.

“I am not saying a little paper bird did all that,” said Bernie. “This is a team effort. I play just a tiny part.”

To see more of Bernie’s work, please visit berniepeyton.com.

Honoring Quincy’s Greatest Wish

As a boy, Bernie Peyton would sit at his chronically ill sister’s hospital bedside and entertain her with his origami creations such as “Getwelephant” pictured above.

GIVE.UCSFBENIOFFCHILDRENS.ORGUCSF BENIOFF CHILDREN’S HOSPITALS FOUNDATION

Foundation Welcomes Erin Hickey

CONNECTIONSSPRING 2016

We are delighted to announce the appointment of Erin Hickey as the Assistant Vice Chancellor of Development for Children’s Health.

In this new position, Erin will design and direct fundraising strategies for the entire Children’s Health enterprise, including UCSF Benioff Children’s Hospitals in Oakland and San Francisco.

Erin joined the UCSF team in 2007 as the lead consultant for the Campaign for the UCSF Medical Center at Mission Bay. In 2014, following the affiliation between UCSF and Children’s Hospital Oakland, she was named Interim Executive Director of Development for UCSF Medical Center.

In accepting the position, Erin said, “I am truly excited to be taking on this role at such an important time. Decades of innovation, discovery, and exceptional care have ranked UCSF Benioff Children’s Hospitals as leaders in the field. With the continued support of our donors and friends, together we can make great leaps forward in advancing children’s health and well being.”

After several trips to their pediatrician’s office, Lisa and Roger Lee still didn’t know what was making their 3-year-old daughter, Quincy, sick. The illness struck suddenly in October 2001 and caused Quincy significant pain.

“It is especially important for children who are ill to experience the joys of achieving something on their own.

”—Bernie Peyton

An emergency room visit finally revealed the problem and a devastating diagnosis: alveolar rhabdomyosarcoma, a pediatric solid-tumor cancer, stage 4.

The Lees rushed Quincy to pediatric oncologist Kate Matthay, MD, at UCSF Benioff Children’s Hospital San Francisco. “Dr. Matthay told us Quincy had a very serious kind of cancer,” says Lisa, who now works as a parent liaison helping other families at the hospital. “At the same time, she reassured us there was hope. That meant so much.”

Quincy received many rounds of chemotherapy, radiation, and surgery, and even had a few months in remission before the cancer returned. Matthay then recommended a different chemotherapy, which worked for longer—about a year and a half.

“We were comforted by the knowledge that Quincy was getting the most current therapies and the most expert care,” says Roger. Sadly, even the best care in the world could not save his daughter, who passed away in 2004.

“I visited Quincy at home in the last few weeks of her life,” Matthay recalls. “Her parents and

two older brothers surrounded that little girl with so much love. It was incredible to see.”

Subsequently, the Lees sought to honor Quincy’s greatest wish—that “all kids with cancer could be all better.” When the couple discovered that only 4 percent of federal cancer research funding is dedicated to childhood cancers, they became committed fundraisers. In December 2015, they donated a remarkable $300,000 to create the Quincy Lee Endowed Fellowship Fund in Pediatric Oncology at UCSF to support research. The Lees’ ultimate goal is to raise an additional $700,000 to fund a Chancellor’s Endowed Fellowship.

“We never receive enough funding for training,” says a grateful Matthay, who arrived at UCSF as a fellow herself in 1976 and now holds the Mildred V. Strouss Endowed Chair in Translational Research in Pediatric Oncology. “Fellowships are so important for attracting young scientists excited about improving treatments and finding cures—for Quincy’s type of cancer and for other metastatic children’s cancers.”

To learn more about the Quincy Lee Endowed Fellowship Fund, visit www.quincylee.org.

Quincy with parents, Lisa and Roger, and brothers, Keenan (left) and Brody.

UCSF BENIOFF CHILDREN’S HOSPITALS FOUNDATION

CONNECTIONSSPRING 2016

GIVE.UCSFBENIOFFCHILDRENS.ORG

WHEN MIRACLES HIT HOMEJohn King pauses for a moment as he places a Miracle Home rider below a “For Sale” yard sign. He’s proud to be part of the RE/MAX Miracle Home Program, in which agents or brokers make a donation to their local Children’s Miracle Network Hospital with every real estate transaction.

King is well aware of the hope his Miracle Agent contributions provide to families throughout the Bay Area because his youngest son, Jonathan, required treatment at UCSF Benioff Children’s Hospital Oakland almost 20 years ago.

At age 12, Jonathan was rushed into surgery with a ruptured appendix. His surgeon, Dr. James Betts, skillfully performed a lengthy surgery while keeping John and his wife at ease throughout the entire process. John recalls, “Jonathan was hospitalized for 10 days, and we knew all along the way he was in the best of hands.”

Now in the real estate business with his father, Jonathan distinctly recalls his time at UCSF Benioff Oakland.

“They recognized that visiting a hospital for the first time can be terrifying for a child, but they did all they could to make it feel like home,”

Jonathan said. For him, this included the help he got from the teachers in the hospital’s school program to make sure he didn’t fall behind academically.

He also remembers the unexpected surprises that brightened his hospital stay, like a visit from Mickey Mouse when Disney on Ice came to town.

RE/MAX agents and brokers such as the Kings have raised more than $130 million for Children’s Miracle Network Hospitals like UCSF Benioff Children’s Hospital Oakland since 1992, one sale at a time. All funds raised by Bay Area

agents stay in the area to give local kids the miracles they deserve.

As a homebuyer or seller, you can play a part too. If you’re interested in helping UCSF Benioff Children’s Hospitals through your home sale or purchase, find a local RE/MAX agent who can help you do both. Tell your agent that you want to make a difference for sick and injured kids in your area by making your home a Miracle Home.

For more information, visit www.remax.com.

RE/MAX Accord agents John and Jonathan King proudly give back to UCSF Benioff Children’s Hospitals through the Miracle Home program.

Maternal-Fetal Precision Medicine Comes of AgeDr. Tippi MacKenzie works in the oldest fetal treatment center in the world. She takes pride in the incredible variety of successful treatments that have been developed at UCSF for rare and fatal congenital anomalies.

However, Dr. MacKenzie—associate professor of surgery in UCSF’s Division of Pediatric Surgery and the Fetal Treatment Center—acknowledges that despite these accomplishments, “we still have a lot of unknowns.”

It is those unknowns that inspired her to join forces with Dr. Mary Norton, a maternal-fetal medicine specialist and clinical geneticist at UCSF, to form the UCSF Center for Maternal-Fetal Precision Medicine.

This new center brings together a team of expert scientists and clinical researchers from our Oakland and San Francisco campuses to better understand, and ultimately cure, a host of fetal and congenital diseases.

“With our growing understanding of the molecular basis of disease, we now have an opportunity to design less invasive methods such as stem cell transplantation or gene therapy to treat a variety of prenatally diagnosed disorders,” says Dr. MacKenzie.

For example, in utero stem cell transplantation can help treat diseases in which stem cells are missing or mutated, such as immunodeficiencies,

inborn errors of metabolism, or muscular dystrophy. Prenatal gene transfer can introduce missing proteins in single-gene disorders such as hemophilia or cystic fibrosis.

“We’re taking advantage of many new developments in genetics and genomics, and

our patients benefit,” says Dr. Norton.

This includes close collaboration with UCSF’s Personalized Genomics Clinic, which analyzes patient DNA to help physicians customize treatment options.

“I am so excited about this program,” says Dr. MacKenzie. “My dream ever since medical school has been to develop stem cell transplantation for fetuses with congenital anomalies. It’s just a matter of being able to do this therapy safely and effectively. Once we have success in one disease, we will be able to apply this strategy for many inherited blood disorders.”

To learn more about the new UCSF Center for Maternal-Fetal Precision Medicine, please visit https://mfprecision.ucsf.edu.

“We’re taking advantage of many new developments in genetics and genomics, and our patients benefit.

”—Mary Norton, MD

“Our son was hospitalized for ten days and we knew all along the way he was in the best of hands.

”— John King, grateful parent and RE/MAX

Accord Miracle Home agent

To sign up, visit give.ucsfbenioffchildrens.org

STAY IN TOUCH

SUBSCRIBE TO OUR ENEWS

Medicine As Her Second ActIt’s not every day that you meet someone who decides to pursue a medical career in their mid-40s. But if you saw the way Kim Lally nurtures the fragile newborns in the Neonatal Intensive Care Unit (NICU) at UCSF Benioff Children’s Hospital Oakland, you would not be surprised.

The Piedmont mother of three visited UCSF Benioff Oakland for fairly routine episodes over the years—rashes, stitches, fevers. Then one day, her high-school-age son went to the emergency room for a more serious condition.

When they arrived at the hospital, the admitting physician was waiting in the triage area and took care of Kim’s son right away. “The service was so impressive,” she recalls. “I realized for the first time what a true difference that makes for kids.”

That day, at age 46, a dream was born: Kim wanted to become a doctor.

After pondering the idea for a while, she followed her heart and signed up to be a volunteer at our

Oakland campus. She knew that this on-site experience would be an important first step toward exploring a career in health care.

Kim began volunteering in the emergency department, helping patients and their families, as well as supporting hospital staff. She then received specialized training to volunteer in the NICU.

Four years after her epiphany in the ER, Kim now mentors the hospital’s new NICU volunteers. She teaches them proper techniques for holding and soothing the hospital’s most fragile babies.

While she still dreams about becoming a physician, Kim is now working toward certification as a physician assistant. This will allow her to spend less time in the classroom and more time helping patients.

“I know I love this,” Kim says. “I can’t see myself doing anything else.”

Leaving a Legacy for Kids

Non-Profit Org.U.S. Postage

PAIDSan Francisco, CAPermit No. 8285

UCSF Box 0248, San Francisco, CA 94143-0248

give.ucsfbenioffchildrens.org(510) 428-3814

BOARD OF DIRECTORS:

GIVE.UCSFBENIOFFCHILDRENS.ORGUCSF BENIOFF CHILDREN’S HOSPITALS FOUNDATION

CONNECTIONSSPRING 2016

“There is no greater reward than making a difference in the life of a sick child,” shares hospital volunteer Kim Lally.

Benefiting UCSF Benioff Children’s Hospital Oakland and the George Mark Children’s House

7th Annual Children’s Health Guild Fundraiser

First Annual Ambassadors for UCSF Benioff Children’s Hospital San Francisco Fundraising Gala

An Evening in the Meadow

Benefiting patients and families during their stay at UCSF Benioff Children’s Hospital San Francisco

Saturday, September 17, 2016

5:00 p.m.Sonoma, CA

For more information, please contact Charlotte Marco at 415-502-3422 or charlotte.marco@ucsf.edu.

Saturday, May 14, 2016 | 5:30 p.m. Claremont Club and Spa, Berkeley

www.childrenshealthguild.org

David Beier

Lynne Benioff

Thomas Bret

Farah Champsi

Jeffrey Cheung

Charles Cole III

Timothy Kendall

Talmadge King, Jr, MD

Mark Laret

Louis J. Lavigne Jr.

Bertram Lubin, MD

Kelley Meade, MD

Jason Moment

Edward Penhoet, PhD

Shahan Soghikian

Elisa Stad

Robin Washington

Carrie Wheeler

Melissa Williams

An estate gift is much more than a financial decision. It’s a personal statement about who you are, what you care about, and what your legacy will be.

UCSF Benioff Children’s Hospitals Foundation depends on people like you to make lifesaving care and world-changing research possible for our young patients. In many instances, a planned gift can help you to do more to advance pediatric care than you ever thought possible.

Whether you want to make an impact on our work today or continue to benefit us after your lifetime, we can help you find a charitable plan that lets you provide for your loved ones and support UCSF Benioff Children’s Hospitals Foundation.

For more information about gift planning options, please contact Tina Hurley at (510) 428-3834 or thurley@mail.cho.org.