Investing in Care

Stephen and Cynthia Fry of Newport Coast are longtime philanthropists in Orange County who were introduced to CHOC Children’s three years ago when their young granddaughter was diagnosed with a rare and deadly genetic disease.

annual-report-2013-investing-in-care-2Charlotte Jordan went undiagnosed by several physicians until age 3½, when CHOC specialists in the division of metabolic disorders diagnosed her with glycogen storage disease 1a (GSD). This disease results in Charlotte’s liver being able to soak up and store glucose, but not release it effectively. Without treatment, the abnormally low content of glucose in her blood (hypoglycemia, commonly referred to as low blood sugar ) can lead to life-threatening complications.  Her very rare disorder requires around-the-clock maintenance, including regular visits with Charlotte’s doctor, Richard Chang, M.D., and his team.

Through this experience, Charlotte’s family was inspired to give back to Dr. Chang and the division of metabolic disorders as a special way of saying “thank you,” making CHOC one of the family’s annual philanthropic priorities.  “The entire team does their job with such grace and care that it’s almost overwhelming,” says Lindsay Jordan, Charlotte’s mother. “It’s a difficult disease. I don’t know how any parent who has a child with a serious illness can get through it without having someone like Dr. Chang in their corner.”

Metabolic disorders are an area of medicine that receive relatively little funding because the disorders are so rare. “The Fry family’s generous giving helps pay for a full-time nurse practitioner to educate CHOC staff members about metabolic disorders,” says Dr. Chang.  “A gift like this allows CHOC to truly care for kids in ways that otherwise wouldn’t be possible.”

No case too rare

Doctors on CHOC’s metabolic disorders team spend hours steeped in research and commonly see patients for whom there is no immediate diagnosis.

“It takes a lot of training to be a specialist in this area,” Dr. Chang says. “Many of the patients we treat have conditions so rare that they are among only a handful of patients worldwide to have that specific disorder.”  Dr. Chang and the metabolic team see about 45 children a week on an outpatient basis. At the same time, they care for five to 10 patients admitted to CHOC who are being assessed or treated for rare metabolic disorders. Such patients, he says, typically require care their entire lives.  Charlotte, now 6 ½, has to be extremely careful about what she eats and because of her enlarged liver can’t participate in contact sports. Every three to four hours, she receives three to four tablespoons of raw corn starch which slowly releases the glucose her body needs without overtaxing her liver.

“Charlotte is thriving, happy and healthy as we can hope for, and that makes my husband and me, as well as my parents, very grateful,” Jordan says. “We’re lucky to have Dr. Chang and the entire metabolic team in our lives.”  This past year, in addition to making their annual donation supporting the division of metabolic disorders, the Fry family gave an additional, and unexpected, $1 million to help build the Bill Holmes Tower and name the admitting reception space that is located on the first floor of the new building. The family wanted the leadership donation to make a significant impact at CHOC and help expand the hospital—a place filled with very special people who have become like family to Charlotte.

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Keeping A Close Watch

annual-report-2013-close-watch
annual-report-2013-close-watch-2By age 4, Grace Rogers was riding a bicycle without training wheels. She was roller-blading and skateboarding—an active, spunky kid growing up in Buena Park with an older sister and little brother.

But her mother, Debbie Rogers, would notice that at times, Grace would appear to be off balance. And she thought it odd that ever since Grace was 2, she slept excessively—12 hours a night, plus an afternoon nap.

“She was so coordinated, but then she would trip or fall,” Debbie says. “And all that sleeping. It didn’t make any sense.”

It wasn’t until she was 6, when Grace’s kindergarten teacher noticed the same things—as well as Grace appearing inattentive for brief spells—that Debbie and her daughter began a journey at CHOC Children’s that continues to this day.

That journey has brought Grace and her mother to a new unit at CHOC Children’s at Mission Hospital that specializes in the evaluation and treatment of the disorder afflicting Grace: epilepsy.

A program like no other

Opened in late 2012, the four-bed inpatient epilepsy monitoring unit (EMU) at CHOC Mission augments the eight-bed inpatient EMU in Orange.

Developed and run by world-renowned pediatric epileptologist Mary Zupanc, M.D., director of the Comprehensive Epilepsy Program and CHOC

Children’s Specialists division chief of neurology, the epilepsy program at CHOC Children’s has been designated as Level 4 by the National Association of Epilepsy Centers, making it the only Level 4 program in the state run by a free-standing children’s hospital.

The new EMU at CHOC Mission offers quiet, private rooms for patients like Grace to undergo intensive neuro-diagnostics monitoring that includes long-term video EEG (electroencephalogram) recording to help CHOC specialists monitor patients around the clock to pinpoint exactly where and why the child is having seizures. CT scans and MRIs also are used.

According to Dr. Zupanc, the EMU at CHOC Mission is for patients with lower-acuity epilepsy whose disorders generally are under control. Patients with more intractable epilepsy are treated at CHOC’s main campus in Orange, where they also undergo surgery if medication fails to control their seizures.

The EMUs provide the highest level of medical and surgical evaluation and treatment for patients with complex epilepsy, says Dr. Zupanc.

Finding an answer

CHOC’s epilepsy program team consists of clinical and support staff, including epileptologists, neurosurgeons, neurologists, neuropsychologists, neuroradiologists, social workers, physical therapists, dietitians, nurses and nurse practitioners, child life specialists and case managers.

“Epilepsy provides multiple challenges for families,” says Dr. Zupanc. “And nobody wants to talk about epilepsy, because unfortunately there’s still a lot of stigma attached to the disorder.”

Epilepsy is a brain disorder in which a person, over time, has repeated seizures, or episodes of disturbed brain activity that cause changes in attention or behavior.  Although much more common than a disorder like ALS (Lou Gehrig’s disease), which affects nerve cells in the brain and spinal cord that control voluntary muscle movement, epilepsy has yet to be a primary focus of extensive attention and research, says Dr. Zupanc.

The epilepsy specialists at CHOC Children’s are determined to help change that.

Grace was diagnosed with so-called absence seizures, which usually last less than 30 seconds and start and end quickly. She was unaware of her seizures—which is common. Sometimes episodes of absence seizures are mistaken for inattentiveness, as was the case with Grace.  Sensing something wasn’t right, her kindergarten teacher called Grace’s mom.

“That’s when I knew I wasn’t imagining things—that I wasn’t crazy,” Debbie says.

Grace ended up in the care of the Neuroscience Institute in June 2011. An EEG detected abnormal activity in Grace’s brain, and she was put on medication.

The medication controlled her seizures, but Grace still was sleeping an abnormal amount, which is common for people with epilepsy. CHOC neurologist, Anjalee Galion, M.D., conducted a sleep study in Orange.

A positive place

Grace was among the first patients to stay in the new EMU at CHOC Mission when admitted in January 2013.

Hospital volunteers kept Grace busy with crafts and activities. She even made a banana split. Therapy dogs also regularly visited her. A television and various electronic devices helped Grace pass the time.

“She would love to order food,” Debbie says. “with the room service and all the fun activities, it was almost like a hotel for kids”

CHOC epilepsy specialists still are working to determine what’s happening inside Grace’s brain. Recent tests have detected abnormal brain activity but no seizures, though Grace continues to sleep as much as 16 hours a day. Another sleep study at the EMU at CHOC Mission is planned.

Says Debbie: “We’re going to keep digging. The doctors say that Grace is a unique patient. She doesn’t fit into a pretty box.”

But it sure is a gift, Debbie adds, that Grace, now 7, is being treated at CHOC.

“It’s been wonderful.”

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Caring For The Smallest Patients

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When she would check in at the front desk to visit her prematurely born twin girls in the new CHOC Children’s neonatal intensive care unit (NICU) at St. Joseph Hospital, Mary Aguilar typically would be greeted with expressions of concern from hospital employees.

Aguilar would respond, “Actually, it’s cool up there.  I never feel like I’m going to a sad place.”

“Up there” is the 13-bed, CHOC Children’s-staffed-and-licensed Level IIB neonatal intensive care unit that, since opening Feb. 11, 2013, has been making life a lot easier for mothers, families and their newborns at CHOC’s adult hospital neighbor—and their newborns who need specialized care.

Aguilar’s girls, Lily and Ella, born just shy of 32 weeks, were among the first patients and the first set of twins to be cared for in the CHOC NICU at St. Joseph Hospital, whose opening coincided with a new mother-baby unit at St. Joseph.

Never far from mom

The NICU, staffed by a team of CHOC neonatal experts, is designed for newborns with low to moderate medical needs—typically, premature babies suffering from respiratory and circulatory problems. Newborns needing a higher level of critical care are sent to CHOC’s 54-bed NICU, located in the CHOC North patient care tower.

Lacy Pester, BSN, RNC-NIC and clinical manager of the CHOC NICU at St. Joseph Hospital said that prior to the opening of the new NICU, it sometimes was inconvenient for mothers to have to make the trip to CHOC’s NICU.  At nights, if there were no volunteers available to accompany them, mothers were not allowed to make the trek, Pester said. No longer.

Now new mothers like Aguilar are only steps away and can visit their babies easily.

The NICU provides accommodations for parents after a mother’s discharge as well.

For 27 days, Lily and Ella—who both weighed around 3½ pounds at birth—were cared for by a team of newborn intensive care nurses, respiratory therapists and physicians who relied on sophisticated monitoring equipment to closely follow their vital functions around the clock, including heartbeat, respiratory status, temperature and blood pressure.The girls got the Twin Room—the only two-bed room among the 12 rooms that make up the new NICU.

Choosing to have her babies at St. Joseph Hospital was easy for Aguilar. Her mother worked there as a security guard in the 1980s and her grandmother was a housekeeper in the emergency department. When her twins arrived early, Aguilar was grateful to hear that her babies would be receiving care in the new NICU.

annual-report-2013-caring-for-the-smallest-patients-2“I was excited, thinking we would have more privacy and our own nurse,” Aguilar says. “It was fantastic. We were in the corner of the unit and everything happened in one room. I loved it.”

Lanky Lily, kind of silly and prone to making pterodactyl noises, and chunky Ella, a happy baby with a sweet disposition, now are healthy babies closing in on 20 pounds. Aguilar, who lives with her husband, Ramon, and their twins in Corona, credits the expert team of neonatal specialists at the CHOC NICU at St. Joseph Hospital, including Christine E. Bixby, M.D., with her babies’ health.

“They always had the girls’ best interests in mind,” Aguilar said. “They are all very loving people. I feel like all the care they received helped set up my girls for success.”

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The Gift that Keeps on Giving

Varla and Curtis Knauss have spent their entire careers helping people get the most out of their hard-earned money—he as a financial planner, she as a CPA.

Now, the Orange County couple is making sure that some of their money will yield ongoing and lasting benefits to CHOC Children’s.

The Knausses recently left a generous gift in their living trust to CHOC.  They say they decided to support the hospital through this avenue because they understood that estate and planned giving was one of the easiest and most impactful ways to support the hospital’s goal to become the nation’s finest provider of pediatric care.  Every gift, no matter the size or the area that it supports, can make a significant impact on the lives of our children.

As a registered representative of Transamerica Financial Advisors, Inc., Knauss has spent his adult life helping local professionals.  Knauss learned the value of a hard-earned dollar at an early age. Growing up in Long Beach, he worked his way through school as a tradesman.

In 1965, Knauss decided he would go into business for himself and became a financial adviser, planning futures for prominent business owners and independent professionals.

With his extensive financial background and expertise, it came as no surprise that a planned gift was the Knausses’ preferred form of philanthropy.  They understood that this type of gift would allow them to support the hospital’s mission and fulfill their philanthropic vision, all while meeting their family’s financial objectives.

Varla and Curtis Knauss are now members of the Circle of Life Society, forging a relationship with CHOC that will last a lifetime.  As members, they receive a gift of appreciation, an invitation to CHOC’s annual Circle of Friends event and recognition in several of CHOC’s publications.

To learn more about how you can make an estate or planned gift to CHOC and become a Circle of Life member, contact Doug Corbin, senior planned giving counsel, CHOC Children’s Foundation, at 714-509-3007.

CHOC Children’s Foundation
1201 West La Veta Ave., Orange, CA 92868
714-509-8690
www.choc.org/giving

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    Stephen and Cynthia Fry of Newport Coast are longtime philanthropists in Orange County who were introduced to CHOC Children’s three years ago when their younggranddaughter was diagnosed with a rare ...
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    The new emergency department, located on the ground floor of the Bill Holmes Tower, is named in honor of CHOC Children’s supporters Julia and George Argyros for their generous gift ...

The First to Answer a Call

argyros family
The Argyros family also has generously sponsored two signature hospital fundraising events, the CHOC Cherishes Children Gala and the CHOC Follies, for which Julia has also donated her time and talent as a cast member. Stephanie Argyros also is on the CHOC Children’s Foundation Board of Directors.

Designed to meet the unique needs of children in a safe and serene environment, the Julia and George Argyros Emergency Department at CHOC Children’s is the first in Orange County exclusively dedicated to the treatment and healing of children of all ages—from the tiniest newborns to adolescents.

The new emergency department, located on the ground floor of the Bill Holmes Tower, is named in honor of CHOC Children’s supporters Julia and George Argyros for their generous gift of $5 million. The 22,000-square-foot emergency department features 31 exam rooms, including 14 rapid evaluation and treatment rooms, and three triage suites.

In addition to their gift for the new emergency department, the Argyros family helped launch CHOC’s comprehensive fundraising campaign, “Change CHOC, Change the World,” with a leadership gift of $1 million in 2009. In recognition of that gift and in honor of Julia and George’s daughter, the surgery center reception area in CHOC’s new tower is named “The Stephanie A. Argyros Reception.”

The emergency department at CHOC Children’s is staffed with doctors who are board-certified in emergency medicine and specially trained nurses who provide the very best patient and family-centered care 24 hours a day, seven days a week.

The emergency department is close to advanced operating rooms, laboratory, pathology and imaging services—each with a dedicated pediatric environment and staff. From the equipment to the facilities to the décor, the emergency department is designed to meet the needs of children.

Each exam room is spacious enough to accommodate strollers and other children who often accompany their siblings on emergency visits to the hospital.

Child life specialists work with patients to help them feel safe and secure and make the process a lot less stressful for the entire family.

In addition to providing families the room and service they need, the emergency department provides many of the services patients may need without having to leave the unit. Most blood draws and tests can be done at the patient’s bedside, and X-ray equipment also is available in the unit.

In all respects, the Julia and George Argyros Emergency Department represents the future of medicine today— a world-class pediatric emergency department that will benefit the children of Orange County and their families for years to come.

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