For more than a decade, the Gomez family has held a special place in their hearts for the CHOC Walk in the Park. The beloved event is a particularly special time every year to honor their son, Robby Gomez.
Robby was born in 2001 at a local hospital with a rare form of laryngomalacia, a congenital condition where floppy tissue above the vocal cords falls into the airway opening when an infant breathes in, causing restriction of the airway.
Upon learning about his condition, their baby boy was quickly rushed to CHOC Children’s, where he was admitted to the neonatal intensive care unit (NICU), and underwent several surgeries, including a tracheotomy, a procedure that opens up the windpipe (trachea) to allow a breathing tube to be inserted to provide an airway.
After a few weeks in the NICU, Robby was finally released to go home. He would occasionally go back to CHOC for care, but otherwise Robby led a typical life with little to no restrictions. As he grew, he was an active, vivacious little boy who participated in sports, played and jumped around like most children.
Tragically in 2006, at age 5, Robby died unexpectedly in his sleep from complications of his condition.
“Robby was an amazing and loving boy, whose strength and positive energy was infectious,” says Robby’s dad, Marty.
Marty and his wife, Julie, knew they had to find a way to give back to CHOC, since CHOC had been there for Robby and their family every step of the way.
“We’ll always be grateful to CHOC. The level of care and compassion that we received was extraordinary and we’re so thankful for the five years CHOC gave us with our son,” Julie says.
When Julie heard about the CHOC Walk, she knew she had to get involved. She formed team Robby “Batman” Gomez in honor of Robby, whose favorite super hero was Batman. The team started off with just a few members – Julie, who is team captain, her mom, and two of Julie’s best friends.
Today, Team Robby “Batman” Gomez has around 30 members, and is one of the top CHOC Walk teams, having raised over $100,000 benefiting CHOC. This year alone, the team has already raised more than $15,000.
“We’re happy to do anything we can for CHOC. The CHOC Walk is such a special, unique opportunity that touches so many lives in our community. You can see the overwhelming compassion of everyone there, whether they are honoring a current patient or a child who has passed on,” Julie explains.
Julie and her friends and family have also held several community fundraisers benefitting CHOC over the years, including car washes, restaurant give backs, and most recently a golf tournament.
The Gomez family, including Robby’s brother and sister, Matthew and Emily, and their friends will always enjoy sharing their little “hero’s” story, especially around CHOC Walk time.
“Robby is our angel. He’s our guiding light, a beacon of goodness, and has forever left an impact on the lives he touched,” Julie says.
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.’”
Not long ago, you could always find Sarah in long-sleeved shirts, even in the middle of the summer.
Sarah tends to get cold easily, but she had another reason for the long sleeves: she needed something to continually wipe the excess sweat from her hands.
“My sweat was probably two to three times the average person when they’re nervous,” Sarah says.
Sarah struggled doing normal activities. “It became really hard to manage when I got to middle school. I had to do more writing and I had more interaction with other kids.” Her school papers would get wet, and later when she was learning how to drive, the steering wheel would get wet from her hands.
Sarah’s mom, Christine, remembers the problem when Sarah was just six years old when the family lived in Japan. “We were in downtown Tokyo and it was really crowded with people, and I went to hold her hand so I could keep track of her,” Christine says. “Sarah said to me, ‘It’s okay, you don’t have to hold my hand.’ She didn’t want me to hold her hand because of the sweat.”
It wasn’t until Sarah was 14, after visiting doctors across three different continents where the family lived, that they relocated to Orange County and finally received a diagnosis: hyperhidrosis. Children and teens with hyperhidrosis have excessive sweating regardless of the environmental temperature and emotional factors. They may have sweating in the hands (called palmar hyperhidrosis) as well as the feet, under the arms and the small of the back.
“If you can imagine your hands always being wet like you just stepped out of the shower, where you hold your hand up and the sweat drips off, that gives you an indication of how significant palmar hyperhidrosis can be,” according to Dr. Troy Reyna, CHOC Children’s pediatric general and thoracic surgeon.
Sarah was referred to a pediatric dermatologist and tried prescription medication, topical ointments and electrolysis (iontopherisis). After these treatments failed to help, the family came to Dr. Reyna, who specializes in a surgical treatment called endoscopic thoracic sympathectomy, or ETS surgery.
“Dr. Reyna was very informative and understanding,” says Sarah’s dad, Rob. “We had an open consultation discussing options and alternatives and we were not asked to make a decision at that point. In fact, Dr. Reyna encouraged Sarah to do her own research and come to her own decision. We left it to Sarah, and after a couple weeks, she came to us and told us she wanted to have the surgery.”
ETS surgery involves making two small incisions on either side of the chest and cutting the specific nerve pathways that lead to the sweat glands in the hands. This minimally invasive procedure is often done on an outpatient basis.
“When I got home from surgery, I noticed that my hands had stopped sweating completely, and I was so excited,” Sarah says.
Sarah still has excess sweating in other areas like her feet and lower back. The condition does interfere with some aspects of her life, but it is more manageable now that her hands are dry.
“If someone else with this condition is thinking about the surgery, I would definitely tell them to look into it,” Sarah says. “You’re not able to do things a regular person can do, and that’s not really fair.”
This summer, Sarah is looking forward to traveling to Germany to visit her grandparents, attending her friend’s sweet 16 birthday party in New York City—and enjoying the warm weather in a short-sleeved T-shirt.
Nico’s birth was full of surprises for his mom Jennifer. The biggest one being that he was a boy, when all along she had been expecting a daughter. That wasn’t the only unexpected realization. He lacked a fully-formed tibia (the bone that connects the knee and ankle), was missing his left thumb, and had several structural heart disease defects, none of which had been diagnosed prenatally.
Unexpected heart defects
Nico was diagnosed with unbalanced AV Canal (AVC), Anomalous Pulmonary Venous Connection (APVC), and Ventricular Septal Defect (VSD) due to the underdevelopment and abnormal formation of his heart and major blood vessels. Jennifer learned early on that her son’s heart conditions were treatable with a series of open heart surgeries and/or cardiac catheterization procedures.
The day after he was born, Nico was transported to CHOC Children’s. He underwent his first heart surgery when he was only three days old, under the care of Dr. Richard Gates, a CHOC Children’s pediatric cardiothoracic surgeon and co-director of the CHOC Children’s Heart Institute. Nico’s second heart surgery happened before his first birthday, and he’ll have a third heart surgery later this year.
“Despite Nico’s significant heart condition, he has responded well to each surgery, becoming stronger right before our eyes,” says Dr. Gates. “I look forward to his final surgery which should allow him to continue to be active and happy.”
Jennifer knew that someday Nico would need to have his leg amputated below the knee, Since Nico’s tibia bone connecting his knee and ankle wasn’t fully formed, it meant his ankle didn’t have the support it needed. Her original plan was to have that surgery performed at another facility closer to their home, when she was told they weren’t comfortable operating on his leg due to his heart conditions. Soon after, she and Nico were at CHOC meeting an orthopaedic specialist to discuss a prosthetic for his leg.
“I didn’t know what we were going to do, but during his prosthetic appointment, we learned CHOC would be comfortable performing his surgery, and could schedule it for just a few weeks later! I was thrilled we could do it earlier because I don’t want him to get to a point later on in life when he remembered or missed when he had more of a leg,” Jennifer recalls.
Shortly before his third birthday, Nico underwent surgery to amputate his leg below the knee under the care of Dr. Francois Lalonde, a CHOC Children’s pediatric orthopaedic surgeon.
After spending just one night in the hospital ―including a checkup with his cardiologist, Dr. Nafiz Kiciman, to make sure his heart looked alright after surgery― Nico was discharged.
“Nico is a brave and courageous young boy with an easy-going personality,” says Dr. Lalonde. “He has demonstrated great resilience and coping skills following surgery and wound care, and is already adapting well following the amputation of his left ankle.”
His doctors told his mom he should take it easy for a few days, but as soon as his cast was removed, he was quickly back to his old habits of climbing on furniture and jumping on pillows.
“I never want my son to have the mentality that he is limited,” Jennifer says. “Kids can sense if their parent is worried or scared, and I didn’t want him to feel like that. He’s too young to feel anxious on his own, so I made sure I didn’t bubble wrap him and let him play like his normal self.”
The importance of pediatric specialists for wound care therapy
The week after surgery, Nico and his mom started coming back to CHOC a few times per week for wound care, where specially-trained pediatric physical therapists would clean and rebandage his leg. In between those appointments, Jennifer cared for the wound at home.
“At his first appointment, he saw a new person walking into the room with all these supplies he had never seen before, and it was a lot for him to take in. He covered his eyes and wiggled around during the appointment,” Jennifer recalls.
To make Nico feel at ease, his physical therapist Sandy started letting him help her care for his wound.
“I wanted to be honest with him about what they’re going to do at this appointment, but frame it in a positive way so he knows it’s for his own good and he doesn’t have to be scared. It’s important to explain things in a way that he will understand,” Sandy says. “If you’re honest with the child, they’ll start to trust you. If you say, “this won’t hurt” and it hurts, then you’ve lost their trust.”
Once Nico was involved, he immediately understood that he didn’t have to be scared of wound care, and that it could even be fun.
Now, when Sandy finishes one step, he grabs the next supply that she’ll need. He almost sees it as a game. “Ok Nico, we’re done with this part. What part is next?” Sandy says to him.
These days, before each appointment, when Jennifer asks Nico if he wants to go see Sandy, he squeals and claps with delight.
“I tell him, “Let’s go see Sandy! She’s going to clean your owie and make it feel better.” My positive mentality was contagious for him. I was excited, so he was excited,” Jennifer says. “If the kid sees the parents squeamish during wound care or sees a worried expression on their face, then the kid will be apprehensive. Whenever we come to wound care appointments I make sure I speak to him in a very upbeat, positive way so he feels like physical therapy is fun and not something to be scared of, which helps him to relax. Positive energy is contagious.”
Continuity of care has also helped Nico feel more comfortable.
“It has helped him to have the same one or two physical therapists each time, so it’s a familiar face.”
Once Nico’s leg was fully healed from surgery, he resumed physical therapy, was fitted for a prosthetic, and started walking. In between all of that, he continues to love anything Star Wars, playing Ninja Turtles, coloring and attending pre-Kindergarten classes.
Children and teens with hyperhidrosis have excessive sweating regardless of the environmental temperature and emotional factors. A surgical treatment called endoscopic thoracic sympathectomy, or ETS surgery can help.
It started with a personal connection to CHOC Children’s; one that sparked a grateful family to give back through their business. Their intent was to raise funds and awareness for the hospital that did so much for them. Their efforts yielded more than they anticipated.
Larry and Angela Worsham, operators of Chick-fil-A North Orange, brought their son Nathan to CHOC Children’s Hospital when he was 2 years old. He was diagnosed with nephrotic syndrome, a kidney disorder that causes the body to produce too much protein in the kidneys and urine. It can lead to swelling, weight gain and increased risk of other health problems.
Because of his condition, Nathan was hospitalized once, when he was in kindergarten. The now 14-year-old sees a CHOC nephrologist about every four months.
“The care Nathan received from the physicians, nurses, child life specialists and other staff when he was admitted to CHOC, and the care he continues to receive, is first class,” says Angela. “We are grateful to CHOC and are honored to support such an amazing place.”
Angela and her husband reached out to the CHOC Children’s Foundation after learning operators of another Chick-fil-A were CHOC supporters. They wanted to see how they could get involved.
“Ever since that initial call from Angela, she and Larry have remained steadfast in their dedication to supporting our greatest needs,” explains Zachariah Abrams, assistant vice president, community engagement and special events, CHOC Foundation. “They’ve been amazing partners who are always open to new ideas. We are grateful for everything they’ve done.”
The Worsham’s support began with donating prizes for the CHOC Walk in the Park, presented by the Disneyland® Resort. They were also quick to meet requests for donating food for patient and staff events, which they continue to do. One of their favorite things, admits Angela, is providing a monthly dinner in the family room, serving the pediatric and cardiovascular intensive care units.
“It’s such an honor and pleasure to provide a little dinner break for parents and family members who spend their days and nights at bedside. And when we are at CHOC, we are always inspired to do more,” shares Angela. “I believe anytime any of us have an opportunity to serve others and act on it, we make our community stronger.”
That desire to serve prompted the Worshams to form, 11 years ago, their own CHOC Walk team “Chick-Fil-A 4 CHOC.” Angela and Larry encourage their employees’ involvement with incentives, helping grow the team to nearly 200 walkers. Their team has raised more than $100,000. A contributing factor is Cookie Day, on which participating Chick-fil-A locations in Orange County donate proceeds from the sale of their chocolate chuck cookies to CHOC.
They are proud of that successful promotion and for their Walk total, but even more grateful for the friends they have met through their participation in the Walk.
“For us, personally, the best thing that has come out of the CHOC Walk is the relationship with the Hicks family, who founded Team Timmaree Rocks. We’ve walked with them for the past nine years and have become close friends. We’ve taken trips together, making amazing memories,” says Angela.
In addition to forming valuable friendships, the Worshams have also developed business relationships and have attracted event and catering opportunities because of their involvement with CHOC. Their brand awareness in the market has increased, according to Angela.
“No matter the size of your company or your budget, everyone has the ability to fundraise and support causes we believe in. I do believe when you care more about the cause than what you will get out of it, you will benefit more in the long run,” advises Angela.
If your company or business is interested in supporting CHOC, call 714-509-7676.