Enjoy the Southern California weather on Choco’s custom boat and support CHOC’s mental health programs at the same time. A portion of every rental will support these programs, and a generous donor is making waves with a $50,000 matching gift.
For rental information, please visit the Lido Marina Village Electric Boat Rental website at eboatsrental.com to get started and select “Book Now.” Be sure to select the CHOC boat.
You can also sponsor a ride on the boat for a CHOC family dealing with a serious illness or injury. Two-hour vouchers/gift certificates can be purchased at the rental office or online at eboatsrental.com. For a tax-deductible gift, make your gift via check or online donation to CHOC Foundation and designate it towards “CHOC Boat Ride.”
Stay Informed about Mental Health
CHOC Children’s has made the commitment to take a leadership role in meeting the need for more mental health services in Orange County. Sign up today to keep informed about this important initiative.
My niece Isabella will be 12 in a couple of months. There will be the mandatory cake and candles, I’m sure, along with family, food, noise, the usual. We will look at those family photos later, and we will all know that there are dozens of people missing from every single picture ― all the doctors and nurses at CHOC who are responsible for our Isabella turning 12 that day ― just like they had a hand in her turning 11 the year before, and 10 before that, and… you get the idea.
As a toddler, Isabella was diagnosed with stage 3 kidney cancer. Today she’s cancer-free. But it wasn’t an easy road in between. For two seemingly unending years, her childhood was spent at CHOC Children’s Hospital in Orange. There were many exams, all kinds of tests, several surgeries, and then some more exams. Even after leaving her hospital room for the last time and finally going back home, there were follow-up visits to CHOC multiple times a week for another year and a half. Throughout it all, it was those fantastic doctors and nurses at CHOC that kept Isabella going, figuratively and literally.
We knew even in the midst of her treatment that this was a
unique, life-changing event for our family. I have so much respect for the staff at CHOC who
does amazing work every single day for hundreds of children and their families.
I wanted to give back to CHOC to say thank you for everything they did for my niece. I joined Moustaches for Kids OC (M4KOC), a national community of mustache growers who make up local chapters and raise money for a children’s charity in their area. For 30 days, the chapter’s growers work tirelessly to grow and display mustaches. When asked, “What’s with the stache?” it’s an opportunity to raise awareness and funds for a worthy cause.
This is not just another fundraising effort for me. It’s very personal. My family owes CHOC more than we could ever pay back. When Isabella gives the camera the inevitable eye roll that most 12-year old girls would on their birthday, we know who to thank.
Illness and injury shouldn’t dim the brightness of the holidays for kids. Help us preserve the magic of childhood – year-round – for our patients by supporting CHOC Children’s the following ways this holiday season:
Nordstrom Cares Campaign
From now until Dec. 24, purchase a $10 giving-tree card at any Orange County Nordstrom or donate to CHOC online.
Alex and Ani Give Back From now until Dec. 31, you can purchase an Alex and Ani Unicorn Bracelet, and CHOC will receive 20% of that purchase. You can buy online with an Orange County zip code or purchase at the Fashion Island, Irvine Spectrum, and Brea stores.
Ace Hardware Holiday Round Up Round up the cost your purchases to benefit CHOC at any ACE Hardware store in Orange County until Christmas.
Panda Express Promotion Orange County locations will be collecting donations to CHOC through Dec. 31.
Coca-Cola Now through Jan. 1, 2019, Coca-Cola will donate $1 to Children’s Miracle Network Hospitals for each personalized holiday-themed bottle of Coke or Coke Zero Sugar purchased at www.CokeStore.com.
Amazon Smile Link your Amazon account to CHOC with AmazonSmile, and CHOC will receive 0.5% of each order!
CHOC Kids’ Cards Give one-of-a-kind greetings that give back this holiday season. Purchase patient created holiday cards. Shop now.
By keeping kids healthy, we can keep the magic of childhood alive and well. Show your support by purchasing CHOC branded merchandise. Proceeds benefit kids at CHOC Children’s hospital.
Donate Give a one time, monthly or annual gift or make a tribute donation in honor of a special person or occasion. Donate online.
Lily’s big sister, Makenna loved her before she was even born. She was actually the one who chose Lily’s name. Their bond only grew stronger when Lily was born with a rare chromosomal abnormality requiring specialized treatment and extra help at home.
“Even though Lily is different than Makenna and her brother, Ethan, they just see her as their sister,” says mom, Danielle. “They’ve helped Lily learn sign language and practice pronouncing words.”
Lily’s entire family has been involved in her care from day one. Makenna, age 11, would regularly tag along to Lily’s physical and occupational therapy sessions. She was keen to learn how she could help take care of her sister. She watched closely as physical therapist Cathy Lopez taught Lily how to move her body, and occupational therapist Lauren Newhouse taught her how to eat solid food (her favorite is avocado).
Seeing the way CHOC’s rehabilitation services team cared for Lily and the progress she made in therapy inspired Makenna to give back.
When Makenna’s school hosted a fair for students to showcase causes important to them, she chose to honor CHOC. She and a few friends watched YouTube videos to learn origami and created dozens of animal and emoji-themed bookmarks. She quickly sold out of them and donated the proceeds to the rehabilitation department at CHOC.
“Raising money for CHOC is the least I can do to thank them for taking such good care of my sister,” Makenna says. “Whenever we are there for an appointment, all the doctors, nurses, therapists and security guards are so nice to us.”
Organizing this fundraiser has inspired Makenna to continue her philanthropic streak.
“It was feels good to do it and it was so easy. It makes me want to do more to raise more money for CHOC,” she says.
Lily’s diagnosis and early days
When Danielle and her husband, David, found out they were expecting their third child, they were thrilled. A few months into Danielle’s pregnancy, a blood test showed that Lily had Turner Syndrome, a genetic condition affecting a female’s growth and fertility. That turned out to be a false positive, but a follow-up amniocentesis correctly diagnosed Lily with Mosaic Trisomy 12, a rare chromosomal abnormality about which not much is known.
Lily was born full-term via C-section at a local hospital. Immediately after birth she had trouble breathing and turned blue, and she was quickly whisked away to that hospital’s neonatal intensive care unit (NICU).
Lily needed a ventilator to help her breathe. She also required use of a CPAP, also known as continuous positive airway pressure, which helped keep her airway open. Danielle pumped her breastmilk so Lily’s care team could nourish her through a feeding tube.
Just outside the hospital, CHOC geneticist Dr. Neda Zadeh was starting to make her way home for the day when she heard about Lily’s condition.
“Dr. Zadeh was on her way out, but she turned around and came back to the hospital to run more tests and get a better idea of what was affecting her,” Danielle recalls. “Dr. Zadeh is amazing.”
In the first few days of Lily’s life, her parents weren’t sure if she would make it or not. When she was 3 days old, she was transferred to CHOC’s NICU for a higher level of care.
Lily spent the next 24 days in the NICU. When she learned how to breathe and eat on her own, she was ready to go home for the first time.
While the family spent much of their daughter’s first month in the hospital, NICU nurses made sure the family didn’t miss out on their first holiday together — Father’s Day. With her nurses’ help, Lily created a special Father’s Day craft for David using her footprints.
These days, Lily sees a mighty brigade of pediatric specialists at CHOC on a regular basis. Although not much is known about her Mosaic Trisomy 12, her care team remains fully committed to ensuring she is safe and healthy. In addition to Dr. Zadeh, Lily is under the care of neurosurgeon Dr. William Loudon, endocrinologist Dr. Timothy Flannery, and otolaryngologist Dr. Nguyen Pham. She also sees a neuro-ophthalmologist at UC Irvine.
Danielle is proud of the progress Lily has made during therapy at CHOC and seeing how that progress sparked Makenna’s giving spirit makes her proud as well.
“Makenna probably doesn’t realize this, but Cathy and Lauren at CHOC really cared for our entire family, not just Lily,” Danielle says. “The entire rehabilitation team at CHOC was incredibly supportive to our entire family. They were the weekly and sometimes daily reminders that we could do it. They impacted our entire family in a way that words simply cannot express. When we look back on Lily’s first years, they are in our memories and always will be!”
After all, Andrew credits CHOC Children’s with saving his daughter’s life, and the annual fundraiser takes place throughout his office – the Disneyland Resort.
Cumulatively, the Disneyland Resort has been CHOC’s largest corporate donor over the past 25 years, and the annual CHOC Walk in the Park is the hospital’s largest fundraiser, raising more than $32 million to date.
“I feel a sense of pride that an organization I’ve been with for 17 years has such a strong relationship with CHOC, which has done so much for my family,” says Andrew, who is part of the Disneyland Resort’s catering and convention services team. “The CHOC Walk is a small way that we give back and recognize the incredible care that we had at CHOC.”
Many Disneyland Resort cast members who have been personally impacted by CHOC participate every year. Last year, the Disney VoluntEARS walk team raised more than $90,000 for the hospital.
The Geis family’s relationship with CHOC began even before baby Sawyer was born. Imaging conducted while she was in utero revealed two possible heart defects, the severity of which wouldn’t be known until she was born.
The family started planning, and immediately after her birth, Sawyer was transferred to CHOC’s neonatal intensive care unit. There, further testing revealed a constricted aorta; an atrial septal defect (ASD), or a hole between the top chambers of her heart; and a ventricular septal defect (VSD), or a hole between the heart’s lower chambers.
Sawyer would need surgery – and she’d need it quickly, specialists told Andrew.
“I don’t think you’re actually ever prepared to hear that when your child is less than 24 hours old,” he says. “It was like a kick to the heart.”
Within days, Sawyer underwent surgery to repair the defects. Dr. Richard Gates, co-medical director of the CHOC Children’s Heart Institute, and Dr. Joanne Starr, medical director of cardiothoracic surgery at CHOC, fixed the constriction in her aorta, partially closed the ASD, and placed a band around Sawyer’s pulmonary artery to equalize pressure in the two sides of her heart and force the blood to flow to the lower half of the body.
While the surgery was a success, recovery in the cardiovascular intensive care unit was tough. There, Sawyer had an irregular heartbeat, which required the activation of an external pacemaker. Then, she also developed a blood clot. That same day, Sawyer experienced a three-minute seizure.
The clot and seizures were successfully mitigated, and a CT scan following the seizure showed no signs of a stroke or blain bleed. But Sawyer remained in the CVICU healing, growing and learning to eat on her own for several weeks.
During her stay, Andrew and his wife, Michelle, took shifts, alternating who stayed with Sawyer and who went home to their 5-year-old daughter, Parker. When Parker came to the hospital to visit, CHOC staff made a point to connect with her and ensure her needs were also met, Andrew recalls.
“My wife and I felt very strongly that it wasn’t only about the care Sawyer received, but that the entire family was taken care of,” he says. “That level of compassion and total family care was evident in all interactions with team members of CHOC.”
And finally, after 32 days, a 1-month old Sawyer headed home to join her family.
During their time at CHOC Children’s Hospital, the Geis family became increasingly aware of the long relationship between the heath system and Disney, from Walt Disney’s early fundraising efforts before the hospital was built to the Disneyland Resort’s $5 million gift toward construction of the new Bill Holmes Tower, which houses the interactive “Turtle Talk with Crush” show donated by Walt Disney Imagineering.
“I certainly enjoy working for Disney and all that it represents, and knowing that Disney is affiliated with CHOC Children’s, which did so much for my family when we were in a medical crisis – I think is a unique blend,” Andrew says.
Just after Sawyer’s first birthday, the family participated in its first CHOC Walk, now a family tradition that will continue at this year’s walk. “Team Sawyer” will strut proudly on Aug. 26, joined by its spunky and sassy, 3-year-old namesake, who knows exactly why they walk.
“Sawyer will point to her scar and she’ll say, ‘Tell me about my scar,’” Andrew says. “We’ll talk about her heart and what was wrong with it and what had to be done with it. ‘Who was with me in the hospital?’ she’ll ask, and we’ll tell her, ‘We were all with you in the hospital.’”