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.

Related articles:

A Bright Future: Josh’s Story

So many people have CHOC to thank for making their future bright, and I just ran into another one in the hospital’s halls!

Let’s learn about Josh, whose time at CHOC as a kid inspired him to go to medical school and become a doctor for young patients.

josh-siembieda-square
Josh is in the third year of his residency at CHOC Children’s.

When Josh Siembieda was just a toddler, he had a severe reaction to milk and was taken to CHOC Children’s.

That hospitalization in 1986 was the beginning of a long relationship with CHOC as he and his family worked to control his allergies and asthma. He became a frequent patient of Sherwin Gillman, M.D., visiting his office “hundreds” of times as a child. He took regular allergy shots and participated in Dr. Gillman’s summer asthma camp.

CHOC Children’s allergy and immunology specialists are known for being thorough in rooting out the causes of allergic and asthma reactions and will spend time educating families about prevention and maintenance. They are the lead on a number of research efforts at CHOC to find the latest treatments, and they offer one of the only clinics in Southern California for eosinophilic esophagitis (EOE), an allergic inflammatory condition of the esophagus.

Josh knows what it’s like to be a sick kid. That unique perspective, and the impression Dr. Gillman and his staff had on Josh, inspired him to become a doctor.

“I went into medicine because of the respect I had for doctors growing up,” he says. “Being a patient with a chronic medical problem definitely played a part in my decision to go into pediatrics.”

Now 30 years old, Josh is in his third and final year of the pediatric residency program at CHOC, and he’s excited to start his career taking care of children.

“And,” he says, “I’m still a patient of Dr. Gillman’s.”

More stories about CHOC patients:

  • CHOC Patient Inspired to Become CHOC Doc
    At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist ...
  • CHOC Walk in the Park: Justin’s Helpers
    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...

A Bright Future: Bryan’s Story

I count myself as one lucky bear for being a part of the CHOC Children’s family. Ever since the doctors and nurses patched me up after my unfortunate fall, I have never wanted to be too far from this wonderful facility and the caring staff. And, guess what?  I am not alone. During my 50-week gratitude tour, I have met so many people who have bright future’s thanks to CHOC. Bryan is just one of them. Read his story to learn more.

When he was 10 years old, Bryan Mundia spent the majority of his time with physicians and nurses.Bryan Mundia

He suffered from a severe case of reflux; one that threatened his kidneys. Following a two-week stay for observation at CHOC Children’s Hospital, he underwent surgery to repair the valve between his ureter and bladder.

While most young boys would choose to put the hospital experience quickly behind them to focus on other pastimes, Bryan couldn’t let go. He had a strong desire to give back to CHOC.

Some 20 years later, Bryan is doing just that.

“My experience with CHOC changed my perspective on hospitals,” recalls Bryan. “I remember how friendly everyone was, from the doctors and nurses to the candy stripers. I remember playing video games – definitely not something I had expected prior to being admitted.”

Bryan speaks of his experience at CHOC with pride.  It was a life-changing event for me, he says.

As soon as he was able, Bryan became a hospital volunteer. His wife, Katie, and their dog, Molly, who is a certified pet therapy dog, are also volunteers, making it a family affair. It didn’t take long for Bryan to realize he wanted to do something even more.  He made the decision to change careers, from land surveyor to the media programs coordinator for Seacrest Studios at CHOC.

In his new role, Bryan manages the multi-media broadcast center, which provides patients with the unique opportunity to engage in activities related to TV, radio and new media.  He, along with his energetic team of interns and volunteers, provides a positive experience for patients and their siblings – one they likely didn’t expect they’d get when being admitted to the hospital.  Bryan can certainly relate to that!

“I know, from personal experience, the impact this hospital has on children and their families.  I am so proud to be a part of CHOC and try to give back in this way,” says Bryan.

 More stories about CHOC patients:

  • CHOC Patient Inspired to Become CHOC Doc
    At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist ...
  • CHOC Walk in the Park: Justin’s Helpers
    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...

A Bright Future: Parker’s Story

So far, my 50-week gratitude tour at CHOC is going great. Already, I’ve met many other people who also have CHOC to thank for making their future bright.

Today, I wanted to share one of these stories with you. Let’s learn more about Parker, who recently celebrated her first birthday – thanks to CHOC.

photo-67A year ago, a first birthday party was an uncertainty for Parker Evans, who was born weighing just 1 pound, 1 ounce after only 23 weeks gestation.

So, when the milestone approached after a long fight in CHOC’s Small Baby Unit (SBU), it was only appropriate that the Evans family would throw a blowout bash for their miracle baby.

“We said it was like a celebration of life,” says mom, Kristina.

Parker is one of scores of micro-preemies who have received special care inside the SBU since it opened in 2010. In the unit, infants born at less than 28 weeks gestation and weighing less than 1,000 grams receive coordinated care by specially trained staff.

“We ended up falling in love with the small baby unit – the nurses, the consistency, the environment,” Kristina says.

The SBU’s space differs from a traditional neonatal intensive care unit: Tiny babies lie inside shrouded incubators that keep light away from their underdeveloped eyes. Even a whisper is harsh for these babies’ ears, so families and staff members speak in a gentle “library voice.” The goal is to mimic the womb’s environment as closely as possible so that infants can focus on growing.

“You never think this would happen to you, or that this world exists – that is until you’re in it,” says Kristina. “I’m so lucky that CHOC has that unit.”

Parker was delivered by cesarean section after Kristina suffered blood loss attributed to placenta previa, a condition where a woman’s placenta is too close to her cervix.

Transferred to the SBU nine days later, Parker remained there for 132 days until she was well enough to go home to south Orange County.

About a year later, Parker is growing and thriving. Parker does receive physical therapy, but she is on track developmentally and physicians foresee no future disabilities.

Kristina credits the SBU and its staff with ensuring a bright future for her daughter.

“I’m not going to lie: Having an extremely premature baby is the hardest thing a parent can ever go through, but everyone in that unit made a huge difference,” she said. “We fell in love with the Small Baby Unit.”

More stories about CHOC patients:

  • CHOC Patient Inspired to Become CHOC Doc
    At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist ...
  • CHOC Walk in the Park: Justin’s Helpers
    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...

CHOC Children’s at Mission Hospital Teen Survives Life Threatening Brain Injury

For two decades, the physicians, nurses and staff at CHOC Children’s at Mission Hospital (CCMH) have been committed to securing bright, healthy futures for the children and families in South Orange County. In recognition of CCMH’s 20th anniversary, we’re highlighting on choc.org just a few of the many inspiring stories about the staff, and patients and families at CCMH.

goodmanIn the story below, we learn how this remarkable patient survived a traumatic brain injury and now shares his experience with other patients and families in the Pediatric Intensive Care Unit, to encourage them and give them hope. 

Any parent would be proud of a teenager finishing his sophomore year with an above 3.0 GPA, earning his driver’s permit, and blocking goals on the soccer field.

For Tammy and Steven Ramsey, pride doesn’t quite capture their feelings toward their son Michael and his accomplishments. Roughly six months earlier, the popular 15-year-old suffered a traumatic brain injury. His family was warned that he may never speak or use the right side of his body again.

On the evening of Nov. 19, 2011, Michael was playing with his soccer teammates. While running in the dark, he tragically tripped over a waist-high chain, resulting in a forceful fall on his head. He was rushed to CHOC Children’s at Mission Hospital, where he underwent emergency surgery to repair a severe fracture to the left side of his skull and to stop a severe epidural bleed.

Michael remained unstable throughout the remainder of the night, and the next day he was taken back into the operating room for a second surgery to stop two new subdural bleeds. His neurosurgeon temporarily removed the left side of his skull. He was placed in a hypothermic coma in CHOC’s pediatric intensive care unit (PICU).

In the PICU, Michael received round-the-clock care, including monitoring by a team of four nurses for the first 48 hours. As scared as Tammy and Steven were for their son, they noted early on the professionalism and expertise of the staff.

Tammy recalls, “We were in awe of how all of the team members worked together. Whether it was at the beginning of their shifts or at the end, they remained attentive and alert. It was very impressive.”

Equally impressive was the staff’s compassion. Nurses encouraged Tammy to bring in personal items and pictures to decorate Michael’s room. They wanted him to feel “at home” when he came out of his coma.

Eight days later, Michael thrilled everyone when he woke up speaking clearly and using the right side of his body. He underwent physical and speech therapy, inspiring staff, family and friends with his remarkable progress. He went home from the hospital less than a month later. He wore a special helmet to protect his brain until his surgery to reattach his skull.

Michael and his family returned to the hospital looking forward to his continued progress, following what would hopefully be his final neurosurgery. While recovering in the PICU, he complained of a slight headache that quickly turned severe, prompting concerns by his nurse. He was rushed back into the operating room to stop a massive bleed inside his brain. His skull was removed – once again, and he was placed on a ventilator. When he awoke and the ventilator was removed, Michael was unable to speak even his name, as the bleed damaged his brain’s speech center.

The PICU team continued their round-the-clock care, supporting and encouraging Michael and his family.

A week later, Michael had his skull put back on. Shortly after that surgery, he was released from the hospital. He worked extremely hard to regain his speech and return to school.

“Michael is the most disciplined, tenacious teenager I know, so everything he’s accomplished in spite of his injury is really no surprise. In addition to the incredible care he received from his medical team, he was blessed by a great support system of friends who stuck by him throughout his entire ordeal,” says Tammy.

Today, Michael is looking forward to starting his senior year, while playing in college showcase soccer games. Inspired by his physician, he is now determined to become a neurosurgeon. He recently became a hospital volunteer and has made frequent visits to the PICU at CHOC Children’s at Mission to share his positive experience with patients and families. He feels it is important to give hope to those who are in similar situations.

He speaks fondly of the team who cared for him.

“Everyone was so kind and nurturing. The nurses are the nicest people I have ever met and were my biggest cheerleaders,” says Michael.

More stories about CHOC patients:

  • CHOC Patient Inspired to Become CHOC Doc
    At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist ...
  • CHOC Walk in the Park: Justin’s Helpers
    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...