CHOC Children’s Patient Gives Back: Juneau’s Story

Juneau Resnick Speech

At 8 years of age, Juneau Resnick experienced a life-changing event. A close family friend, Gina, passed away after a devastating battle with brain cancer. Gina had devoted her life to working with infants in a neonatal intensive care unit (NICU). Juneau, who spent the first 40 days of her life in a NICU, developed a special bond with her. Owing to her prematurity, Juneau developed hydrocephalus necessitating numerous brain surgeries. After a series of difficult events, Juneau’s parents transferred her care to Dr. Michael Muhonen, medical director of The CHOC Children’s Neuroscience Institute.

To honor Gina and to thank Dr. Muhonen and the CHOC team who did so much to improve her health, Juneau and her teacher came up with the idea of a fundraiser to coincide with the 100th day of school. In addition to passing out flyers, Juneau spoke in front of 700 people at a school assembly. She shared her personal experience with CHOC, and made a plea for each student to bring in 100 coins. Combined with a baked goods and lemonade sale organized by Juneau, the students’ donations totaled almost $1,000.

“She is truly passionate about helping others. She has an unwavering passion that I’ve never seen before and I work with kids,” says Juneau’s mom Ai, a substitute teacher. “I’ve seen a lot, and she is a rare bird.”

Juneau remains dedicated to continuing to raise money for CHOC. Every month, she partners with her teacher to sell pencils, erasers and other supplies at school to support an initiative dubbed Kids and K9, benefitting a local animal shelter and CHOC.

“I’m doing it to make kids happy and put a smile on their faces,” said Juneau. “I want them to forget where they are and just have fun.”

The young philanthropist is grateful for her renewed health and so happy to be under the care of CHOC Children’s.

Learn how you can start your own fundraiser for CHOC.

CHOC’s NICU Is Expanding to Better Serve the Families of OC and Beyond

NICU expansionFor several decades, CHOC Children’s has offered highly specialized care for the most critically ill babies. CHOC’s neonatal intensive care unit (NICU) proudly offers 67 beds in Orange, 22 beds in Mission Viejo, and a team of premier neonatologists who provide coverage at hospitals throughout Southern California.

To enhance our patient- and family-centered care experience and meet the growing demand for services, CHOC will expand its NICU with the build out of 36 private rooms, with potential for more beds in a second construction phase. Located on the fourth floor of the state-of-the-art Bill Holmes Tower, the expanded unit is scheduled to open in summer 2017.

Private NICU rooms are setting a new standard for improved patient outcomes. A recent study published in the journal Pediatrics found that infants cared for in single-family rooms weighed more at discharge and gained weight more rapidly than those cared for in an open design. Also, they required fewer medical procedures, had increased attention, and experienced less stress, lethargy and pain. The researchers attributed these findings to increased maternal involvement.

Further, the private-room setting provides the space and privacy that parents need in order to be more intimately involved in the care of their baby, including breastfeeding and skin-to-skin contact, and parents can actually spend the night with their child. In addition, private rooms give staff more access to and interaction with the family and patient.

The unit will also feature a multipurpose family room, additional office space and other enhanced amenities.

CHOC’s NICU was recently named one of the nation’s “top 25” by U.S. News & World Report, reflecting the NICU team’s unwavering commitment to the highest standards of patient care and safety.

Learn more about our NICU expansion plans. 

CHOC Supporter Sandy Segerstrom Daniels to Be Honored on National Philanthropy Day

Sandy Daniels

CHOC Children’s supporter Sandy Sergerstrom Daniels will be honored with a Legacy Award for her philanthropic work with CHOC and other Orange County organizations at a National Philanthropy Day luncheon on Nov. 19 at the Hotel Irvine.

Sandy, a children’s advocate and C.J. Segerstrom & Sons managing partner, recently donated a $5 million lead gift to help establish the CHOC Children’s Mental Health Inpatient Center for children ages 3-18. When Sandy learned about the lack of psychiatric inpatient beds and services for children under the age of 12 in Orange County, she was deeply inspired to help.

The new center is the cornerstone of CHOC’s transformative initiative to ensure children and adolescents with mental illness receive the health care services and support they currently lack in Orange County’s fragmented system of care.

Sandy’s relationship with CHOC goes back about two decades, starting with her participation in the CHOC Follies, a beloved annual musical put on by community members to raise money for CHOC. This allowed her to combine her love of theater with her passion for helping children. Today, as co-chair of this special event, Sandy can be found on stage every year singing and dancing alongside other CHOC volunteers, who have helped raise nearly $8 million for CHOC.

Yet, her bond with CHOC is most evident perhaps through her own experience of having had a loved one receive care at CHOC.

“My granddaughter was only two days old when she went to CHOC,” she said. “It wasn’t just about the level of care she received, but how they took care of my daughter and son-in-law too – that’s what CHOC is all about. It’s specialized care and specialized, caring people. Supporting CHOC has been a labor of love for me ever since.”

Sandy’s life-changing work with CHOC and countless organizations in the community is a testament to her commitment to improving the lives of children and their families.  She will be recognized along with eight other honorees at the upcoming luncheon.

National Philanthropy Day Orange County honors individuals, businesses and organizations that have demonstrated philanthropy and enhanced their communities and the world.

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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