CHOC Patient Named Calif.’s Children Miracle Network Hospitals Ambassador

Eight-year-old Jordin has sickle cell disease, a disorder that means her red blood cells are misshapen, which can lead to reduced blood flow to many parts of her body, and frequent hospital stays at CHOC Children’s for pain management. But for her, it’s also been an opportunity to fundraise and raise awareness of sickle cell disease.

CHOC is proud to be part of the Children’s Miracle Network Hospitals family, a national network of corporate partners and programs whose fundraising allows CHOC to help kids like Jordin, and offer exceptional care and state-of-the-art treatments and technology for patients and families with the most complex needs in pediatric medicine.

Recently named a Children’s Miracle Network Hospitals Champion, Jordin will spend the next year traveling the country and raising awareness of the needs of children’s hospitals throughout the nation, including those of CHOC.  Each year, one child from every state is honored with this ambassador position.

Jordin’s ambassador tour kicked off with a trip to Washington, D.C. where Champions shared their inspiring stories to encourage charitable support for children’s hospitals, including attending Senate meetings on Capitol Hill. The end of her year as ambassador will conclude with a trip to Orlando, Fla. as the ambassadors reunite to thank and further inspire those who support the children’s hospitals the Champions depend on.

Jordin CMNH
Jordin’s family joined her on her ambassador tour to Washington, D.C.

Jordin’s history with CHOC runs deep. When she was 3 years old, Jordin was admitted to CHOC for complications of sickle cell disease. Her care team suspected acute chest syndrome, one of the most common causes of death in sickle cell patients. Due to technology constraints at the time, tests were sent offsite for evaluation and getting results could take up to a week.

As they awaited the results, Jordin’s family made a commitment to help other kids fighting sickle cell disease.

“During that week, we realized that we needed to step up and do something for CHOC, so no other families had to wait this long,” said Jordin’s mom, Karen.

Karen recruited family and friends with event planning, social media and fundraising experience to form Jordin’s Journey, a group of people dedicated to fighting sickle cell disease, and helping Jordin. They raised $32,000 to secure a Sebia Electrophoresis machine, which helps monitor and treat blood disorders efficiently at CHOC.

When she grows up Jordin wants to be a doctor so she can help other children the way she’s been helped.

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Living with Scoliosis: Jessica’s Story

During a routine check for scoliosis during physical education class in seventh grade, a teacher noticed a slight curve in Jessica’s spine. A trip to her pediatrician soon followed. X-rays showed a thirty degree curve and since that was considered slight, follow-up imaging was recommended for a year later. By that time Jessica’s curve worsened by 15 degrees, and she was referred to Dr. Afshin Aminian, pediatric orthopaedic surgeon and director of the CHOC Children’s Orthopaedic Institute.

Bracing was initially recommended to try to prevent Jessica’s curve from getting worse.

“People my age don’t know that much about scoliosis even though it’s so common,” says Jessica. “I only had to wear my brace at night while I was sleeping, so no one ever really saw it or had the opportunity to tease me because of it, but they still asked questions, like was it comfortable or not.”

Although Jessica was vigilant about wearing her brace as instructed, her curve worsened by another twenty degrees, to nearly 70, and surgery was recommended. As a lifelong dancer, and a member of her high school’s competitive dance team, Jessica was initially worried that having surgery to correct this significant curve would affect her flexibility.

scoliosis
Jessica’s spine, before and after surgery.

“It’s very common for children or adolescent patients to be hesitant or even fearful when they first hear they need surgery,” says Dr. Aminian. “We encourage all of our patients to ask a lot of questions so they really feel like they are involved in their care team. We remind them that the team of orthopaedic surgeons at CHOC uses the very latest methods in a setting that’s specially designed for kids and teens, so they are in the best hands possible.”

Jessica’s surgery was ultimately set for winter break during her sophomore year of high school.

“All of my nurses were so impressed that I was up and walking the next day, but after I went home it was harder than I thought to move around” she said.

At a check-up with Dr. Aminian a few weeks later, Jessica was healing so well that she was able to return to school three weeks after surgery, as opposed to the three month break she had expected. Thanks to her flexibility as a dancer prior to surgery, she could even touch her toes at her follow up appointment, to the surprise of her care team.

Getting back into the groove of a full school day did not come without challenges. To protect her spine as it continued to heal, Jessica had to adjust to sitting for longer periods of time, something she slowly worked up to before returning to school. She also brought a small pillow to school to make her desk more comfortable, and made arrangements with teachers to keep textbooks in class so she didn’t have to carry them around.

“For an active person like me, not being able to bend, twist or lift anything for three months was hard, but in the end it made me thankful because my recovery was temporary, and overall I am really healthy,” she says.

Jessica knew she wanted to document her recovery phase, so she asked her mom to film some footage while she was in the hospital. That eventually morphed into a series of YouTube videos educating others on scoliosis, recovery tips, and sharing her own journey with the condition. When she was diagnosed, she knew others who had scoliosis, but no one’s curve was as severe as her own, so some peer-to-peer questions were left unanswered.

scoliosis
After her own successful scoliosis surgery, Jessica now imparts wisdom on other teens suffering from scoliosis.

“I want other scoliosis patients to know that it’s going to be hard, and you will have times when you can’t do something, but I promise it will get easier if you just go at your own pace and follow your doctor’s guidelines,” she says. “I love getting messages from people that watch my videos, thanking me for helping to calm their nerves before surgery.”

Filming these videos and helping other patients has helped to fill the void that dancing left. After losing one year of practice time due to surgery and recovery, Jessica decided not to go back to dancing.

“I’m busy in different ways now,” says Jessica. “Dancing provided great memories for me, but I’m on to a new chapter now.”

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Music to a Little Girl’s Ears

Penelope Grand had normal hearing from the day she was born. She loved to dance to music and she was easily woken by noises. Her parents, Luci and Paul, anxiously awaited her first word. Then, when she was about 10 months old, something changed.

“We really knew there was something wrong when I went to get her out of her crib after her nap one day,” mom Luci says. “She was calling out and fussing, she wanted out of there, and I came into the room but she wasn’t facing the door. I stood right in front of her crib and I called out her name, I clapped, but I got no response from her.”

Genetics are the cause of roughly half the cases of prelingual deafness, even when symptoms don’t appear at birth, as in Penelope’s case. Hearing tests and an auditory brainstem response (ABR) test revealed that Penelope had developed profound hearing loss in both ears. She had become essentially deaf.

“We were devastated,” Luci says. “I was preparing to hear ‘mild to moderate,’ not ‘profound.’ The air sucked out of my lungs. I wondered why. She is so sweet and loving, why did she have to lose her hearing?”

cochlear implant

Penelope’s audiologist prescribed hearing aids, but she had no benefit from them. That made her an ideal candidate for a cochlear implant, a new treatment offered at CHOC Children’s in close partnership with Providence Speech and Hearing Center. A cochlear implant is a small electronic device that is surgically implanted under the skin behind the ear, and has an electrode that extends into the cochlea in the inner ear. The implant’s electrode directly stimulates the cochlear nerves that perceive sound.

Dr. Nguyen Pham, CHOC pediatric otolaryngologist and head and neck surgeon, performed two outpatient surgeries on Penelope to place a cochlear implant on each of her ears.

“A cochlear implant can be life-changing for a child,” Dr. Pham says. “Children who would have been in the deaf community are now joining the hearing community because of cochlear implants. It is essentially restoring nearly normal hearing in these children.”

A Sense of Sound Restored

Oct. 13, 2015, was a memorable day for the Grands. That’s the day Penelope’s cochlear implant was activated, amidst her family and a crowd of supporters from CHOC and Providence.

Penelope begins to hear at 0:06.

“The first moment we knew she could hear was, well, it’s hard to describe what that felt like: joy, pride, happiness, excitement,” Luci says. “The look on her face was beautiful. We must have rewatched that video a hundred times.”

A cochlear implant does not translate sound perfectly. Those who wear an implant hear sounds with a robotic, mechanical quality. Following the implant’s activation, Penelope’s team of audiologists at Providence fine-tuned the frequencies of the electrodes—a process called mapping—until they produced the optimal sounds for her ears.

Now, she is undergoing comprehensive speech and language therapy, a crucial step in helping her interpret the sounds she hears and learn to communicate. She also uses American Sign Language.

“We are in awe of her, how much she’s already progressed,” Luci says. “She responds to her name now when we call out to her. She finally said her first word, bye bye, and she can now say mom. She has begun to dance again. She also has started singing in the car with me along to the music. We realized that she is so smart and so very happy, and her potential is endless. We are happy and grateful every day that she had this opportunity.”

Learn more about the CHOC Children’s Cochlear Implant Program.

 The Cochlear Implant Program is generously supported by Wildcard Army, in memory of Nixon Wildcard Hunter. 

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Living with Hemophilia: Nick’s Story

Nick Carebetta is an active 31 year old.  When he’s not busy managing a restaurant, he’s surfing, running or hiking.  The athlete has completed numerous half marathons and three Spartan races.  To friends and family, he’s the picture of perfect health.  In fact, people may be surprised to know Nick has hemophilia A.

A disease that prevents blood from clotting properly, hemophilia A is caused by a deficiency of a clotting protein called factor VIII.  Nick’s case is considered severe.  Patients like Nick bleed longer after an injury, and may have frequent spontaneous internal bleeding episodes in their joints and muscles.

Diagnosed with the disease when he was 3 months old, Nick experienced several bleeding episodes in his left ankle.  The pain and inflammation impacted his mobility, which left him dependent on crutches for much of his childhood.

When he was 13, he underwent a procedure called radioactive synovectomy. A small amount of Yttrium, a radioactive material, was injected into Nick’s ankle to reduce the number of cells in the joint lining.  This reduction leads to decreased inflammation, and hopefully less pain and more movement.  Yttrium is used due to its low radioactive energy levels and its ability to leave the body quickly. Nick had the procedure performed twice.  About four months after the second injection, Nick’s bleeds stopped; his pain dissipated; and his mobility returned.

Today, Nick manages his disease with help from CHOC Children’s hematology team.  During his annual check-ups, he meets with a physician, physical therapist, psychologist and nurse coordinator.

“I am so impressed with the compassionate and comprehensive care I receive at CHOC.  From the physicians, who are highly regarded in their field, to the psychologists, who care about my mental well-being, the entire team is dedicated to making sure their patients live happy, healthy and fulfilling lives, despite their disease,” says Nick.

Living with hemophilia

There is currently no cure for hemophilia.  Treatment includes clotting factor replacement therapy.  Nick gives himself shots of a clotting factor, called factor VIII, three times a week.  Depending on his level of activity, he may adjust his dose.  He also follows instructions from his CHOC care team to preserve his joint mobility and core muscle strength.  He doesn’t let his treatment or his disease interfere with his life.

“Nick is setting an example for all of our patients that hemophilia does not define who he is.  He chooses to be more,” says Dr. Amit Soni, CHOC hematologist.  “In addition to his active lifestyle, he is passionate about theater and the arts, and is leading the restoration effort of a historic theater.  He’s also incredibly altruistic in his efforts to give back to the community, whether through participating in clinical trials to advance hemophilia care for the next generation to raising money by joining in the CHOC Walk.”

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The Power of Holistic Care

Zac McNeese laced up his first pair of hockey skates before his third birthday. By the time he turned 7, his competitive team was traveling all over the country and being coached by former professional players. A series of concussions prematurely ended his time as a nationally ranked hockey player at the age of 14 and kept him out of school for months. Thanks to holistic care treatments through CHOC Children’s integrative health services, working in partnership with CHOC’s concussion program, Zac is back in school and getting the chance to be a normal teenager again.

Zac McNeese
Zac began playing hockey at age 3.

Three Concussions in Two Years

Zac’s first concussion occurred during a hockey tournament in Canada. A hit to the head with a hockey stick rendered him unconscious for a short time, followed by short-term memory loss. He was taken to the nearest emergency room for evaluation. After a six-week stint out of school and sitting out of hockey for another few months, he returned to the sport he loved.

But three games into his return he suffered a whiplash-style concussion. Although this one was milder than the first, its proximity to the last injury concerned Zac’s doctors. His family was familiar with the medical benefits of acupuncture, so his parents convinced him to give it a try in hopes of relieving chronic headaches and back pain that was lingering from his second concussion.

“It took some time for me to warm up to the idea of acupuncture, but my older brother had these treatments done when he was a patient at CHOC, and I knew how much they had helped him, so I finally decided to try it for myself,” says Zac. “Over time I saw results and could feel it helping my neck and back problems.”

He began acupuncture treatments with Ruth McCarty, director of Chinese medicine and acupuncture at CHOC.

“The goal of acupuncture treatments is to improve the quality of life for our pediatric patients with diverse medical problems by providing benefits that complement their other medical treatments. Acupuncture isn’t invasive or scary, and it helps you relax.” explains Ruth. “If you can’t relax, it’s impossible to start healing your other ailments.”

The National Institutes of Health have critically evaluated clinical studies and concluded that acupuncture is effective for a variety of medical problems including management of pain and headaches, added Ruth.

Other treatment methods Zac benefitted from include massage, aromatherapy, herbal supplements, yoga and meditation helped improve Zac’s headaches and depression, says Zac’s mom Dana.

A year later Zac suffered another, more serious concussion. During a hockey game, he got hit from behind and was knocked unconscious while mid-air, then fell and hit his head. He was paralyzed from the waist down for 36 hours and doctors ran numerous tests to scan for permanent damage. After a few days of observation, he was sent home to rest in a neck brace, but wouldn’t return to school for several more weeks.

Zac McNeese
Zac was hospitalized after his third concussion.

A New Normal

Zac’s care team said he could not play hockey again, for risk of future injury. The news was devastating to the young man who had given up countless social activities over the years to dedicate himself to hockey.

“When my doctors said I couldn’t play hockey ever again, at first it just felt like a break, like my season had ended and I would be back on the ice soon with my teammates,” says Zac. “But after six months of not playing, it finally hit me that I was never going back to the sport I loved and had played for almost my entire life.”

Zac struggled with chronic anxiety and bouts of depression while he dealt with this news. He also struggled with acclimating to high school. He’d been a straight-A student for years, but he now had trouble concentrating. He also experienced hyperreflexia, meaning his reflexes were overactive and his legs often twitched and bounced.

He decided to try home-schooling as he continued working on his recovery, which included more frequent sessions with Ruth and ongoing monitoring by neurologists in CHOC’s concussion program.

That break from school turned out to be as beneficial for his health as it was for his mind.

“Now I want to help other kids going through this. When I got my concussions, I didn’t know anyone else who had gone through it,” Zac says. “But I want to encourage other kids to be open minded about talking to someone about how you’re feeling, and don’t be stubborn about alternative treatments.”

Zac McNeese
Zac was recently able to return to school thanks to the help of his holistic treatments at CHOC in partnership with the CHOC concussion program.

To fill the void, Zac has taken up lower-impact sports like tennis and golf. He now has time to explore his new interests, like playing guitar and piano. He remains under the care of a CHOC neurologist and continues weekly treatments with Ruth.

“He’s a very resilient kid, but he wouldn’t be where he is today and be back in school without being open to alternative medicine and being able to talk to someone about his sense of loss, and how he was going to move forward,” says Dana.

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Young Athlete Returns to the Pool after High-Stakes Heart Procedure

Even through intense water polo training and games, Ashley Klein had never experienced as much as a flutter inside her chest. And suddenly, emergency department staff were using words like heart failure, bypass, transplant and pacemaker.

A routine sports physical showed Ashley had an elevated heart rate, and CHOC Children’s cardiologist Dr. Anthony McCanta ultimately diagnosed her with ventricular tachycardia, a condition wherein her heart beat too fast and pumped blood in a dyssynchronous, or disorganized, way. This caused her heart muscle to weaken and enlarge, a second diagnosis called tachycardia-induced cardiomyopathy.

Though she felt perfectly fine, unbeknownst to Ashley, she’d had a ticking time bomb inside her chest.

Ashley Klein

“When you read about those poor kids who die suddenly at sports practice, this is that,” Ashley’s mother, Lisa, said. “It was really frightening.”

Ashley’s heart was only pumping out about 13 percent of the blood in its left ventricle. This measurement is called ejection fraction, and a normal heart should pump at least 55 percent. Ashley was at great risk for heart failure, and Dr. McCanta needed to work quickly.

After trying anti-arrhythmic medications, Dr. McCanta opted to correct the problem through radiofrequency ablation. By inserting catheters through Ashley’s leg and up into the heart, he would destroy cells in Ashley’s heart that were misfiring and causing the problem.

But in Ashley’s case, this procedure was especially complicated because of the location of the problem inside her heart.

Dr. McCanta and his team used catheters to create detailed 3-D maps of the inside of Ashley’s heart. The maps revealed the abnormality that was causing the rapid heartbeat was in the ventricle, but near the atrioventricular (AV) node, which sends electrical signals between the upper and lower portions of the heart.

Harming the AV node during the ablation would have resulted in Ashley needing a pacemaker. However, not correcting the ventricular tachycardia would almost certainly increase her risk of severe heart failure and lead to the possibility of needing a heart transplant, Dr. McCanta said.

“This was a risky procedure with very high stakes. Precision was even more important than it usually is,” he said.  “During the procedure, I discussed the risks of potential AV node injury versus worsening heart failure with Ashley’s family, and they decided it was more important to take care of it. So, we fixed the problem in a safe way.”

To ensure total accuracy, Dr. McCanta relied on the detailed 3-D heart mapping and a precise radiofrequency burn to ablate the problematic cells. The technology is used in CHOC’s state-of-the-art cardiac catheterization lab.

Within days of her procedure, Ashley’s heart function was almost completely restored and her ejection fraction had increased to about 48 percent.

“Her recovery has been remarkable,” Dr. McCanta said.

After taking the summer off from sports to recover, Ashley, 16, re-joined her water polo team this past fall.

“We are so grateful Ashley was at CHOC,” Lisa said. “Throughout the whole ordeal, we had complete faith in her doctor and knew that, regardless of the outcome, she was being given the best care by the best doctors and nurses. We would not have wanted to be anywhere else.”

Lisa added, “We want to stress the importance of sports physical, which we used to consider tedious. It literally saved our daughter’s life.”

Learn more about CHOC’s electrophysiology program.

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National Blood Donor Month: Mackenzie’s Story

Before Mackenzie James-Wong was born, prenatal ultrasounds and testing diagnosed her with TAR syndrome, a rare genetic disorder that meant she was missing a bone in each forearm and had a dramatically low platelet count. Doctors also detected a heart defect that would require surgery immediately after she was born. Her mom Lindsay changed her birth plan so she could deliver at St. Joseph Hospital, and Mackenzie could immediately be under the care of nearby CHOC Children’s.

Her family’s relationship with CHOC’s Blood & Donor Services Center started when Mackenzie was in the Neonatal Intensive Care Unit (NICU).  They quickly learned how many transfusions lay ahead of them.

A healthy baby’s platelet count at birth is 50,000. Mackenzie’s was just 13,000. She needed transfusions right away. Mackenzie spent the first six weeks of her life at CHOC, and received dozens of platelet transfusions during that time. Over the next three years, she received nearly 200 blood and platelet donations.

MackenzieJamesWongNICU
Mackenzie spent the first six weeks of her life in CHOC’s Neonatal Intensive Care Unit.

“Sometimes she needed two transfusions in the same day. Eventually it slowed to every other day, and then once every 10 days, but then we regressed back to every four or five days,” said Lindsay. “The team from Blood & Donor Services visited us in the NICU, and educated us about the importance of finding regular donors who were a match for Mackenzie and who could provide a reliable and steady stream of platelet donations to fulfill her needs.”

The Blood & Donor Services Center identified two donors who were each a perfect blood and platelet match for Mackenzie. With her family’s permission, the donors heard Mackenzie’s story and how they could help. They opted into the Designated Donor Program, which allows a donor’s blood and platelets to be directed to a specific CHOC patient in need.  Mackenzie has since met her donors, who have become part of her family, Lindsay says. Every year in December, one donor dons a Santa Claus suit, grows out his beard, and brings Christmas gifts to his donation appointment for Mackenzie and her older sister. The pair of donors come to Mackenzie’s birthday party every year, and have been known to rush home from vacation to make special platelet donations if Mackenzie is in need.

Mackenzie at age four
Mackenzie at age four

Every time Mackenzie has an appointment at CHOC, she stops by the Blood & Donor Services Center with her mom to personally thank donors for helping kids just like her.

“I tell these donors every time I see them that they are literally saving my daughter’s life with every donation,” says Lindsay. “She would not be here without platelet donations. When they donate blood and platelets at CHOC, it stays at CHOC to help patients like my daughter.”

In 2015, CHOC donors supplied 45 percent of the blood and platelets needed by CHOC patients requiring a transfusion. CHOC had to purchase the remaining needed blood products from outside sources.

“Having blood and platelets come directly from our blood donor center allows us to have the freshest blood available to meet the critical needs of our patients, and support our recently opened Trauma Center,” said Colleen Casacchia, RN, manager, CHOC’s Blood & Donor Services Center. “CHOC relies on blood donors in our surrounding communities to help meet our patients’ transfusion needs. One blood donation can save two lives and only takes about one hour of time every two months.”

Donating blood and platelets at CHOC has become a family affair for Mackenzie’s relatives. Her dad, grandparents and aunts all donate blood and platelets at CHOC in honor of Mackenzie.

For Lindsay, donating blood began at a young age. She celebrated her 17th birthday by making her first blood donation. Although she isn’t a match for her daughter, she regularly donates blood at CHOC to help other patients in need.

“I can’t always give financially, but blood is something I have plenty of, and it really doesn’t take that much time out of my day,” she says.  “It was always something I was passionate about, but once it hit my family, I realized how life-saving it truly was. I want other persons to realize how important it is to donate blood and platelets, before someone in their family has a need for it.”

Learn more about donating blood and platelets at CHOC to help patients like Mackenzie.

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New Laser Treats Children with Vascular Anomalies

Many babies are born with small blemishes—a little patch of redness here, a birthmark there. These typically aren’t cause for concern, and most go away on their own. But what if they don’t?

Casey at birth and at two months old
Casey at birth and at two months old.

When Casey Lang was born, she had two small marks on her body: one on her left cheek, and one on her abdomen. “As the doctors were coming in to check on her, we kept asking if it was normal. They said it was a stork bite and that it would go away,” mom Michelle says. “A couple of weeks went by and it started to get darker and larger. I kept telling my husband, this is not right.”

By the time Casey was two months old, the blemish on her face had become blotchy and was encroaching on her eye, and the growth on her abdomen had grown to the size of a lime. Her parents were getting increasingly concerned.

Getting Answers

Michelle took Casey to her pediatrician, who referred her to CHOC Children’s plastic surgeon Dr. Daniel Jaffurs. Immediately upon seeing Casey, Dr. Jaffurs diagnosed the marks as infantile hemangiomas and consulted with the rest of the team from the CHOC Children’s Vascular Anomalies Center. They recommended that Casey be admitted to the hospital that day for comprehensive testing, to determine the severity of the hemangiomas.

“They started her on propranolol in the hospital and the journey started from there,” Michelle says. “It was a year on the medication, and we came to CHOC every single month. The medication was remarkable. It brought down the hemangioma on her face and opened up her eye.”

The growth on Casey’s stomach did not respond as well to the medication and was surgically removed by Dr. Jaffurs. What remained of the hemangioma on Casey’s face, however, could be treated with a simple procedure that had just become available at CHOC.

No Surgery, No Scar

CHOC’s new pulsed dye laser (PDL) is a minimally invasive treatment for hemangiomas, port-wine stains and post-surgical scarring anywhere on the body. The laser delivers very quick pulses of energy at a specific wavelength that is absorbed into the skin, destroying the abnormal blood vessels just below the surface. CHOC uses the latest PDL model—the Vbeam Perfecta— because of its level of precision, which is especially important when lasering sensitive areas like near the eye.

“With this new laser, we sometimes can avoid an operation which leaves a lasting scar,” Dr. Jaffurs says. “And, you can see the results immediately.”

Casey after her first laser treatment, and after her second laser treatment
Casey after her first laser treatment, and after her second laser treatment.

CHOC’s pediatrics-trained anesthesiologists give patients a small amount of anesthesia using a mask, to relax them and minimize movement during the procedure. Patients are sent home the same day; side effects are very minimal and may include slight pain or bruising. The number of treatments needed depends on the location and size of the vascular anomaly.

Casey was one of the first patients at CHOC to be treated with the pulsed dye laser and after just two treatments, the hemangioma on her face is nearly gone. Most patients require three to five treatments depending on the severity of the malformation.

“I want other parents to know that if their child has this, there is a cure for them,” Michelle says. “The team they have at CHOC, it’s just amazing, and if you go there, you’re going to get answers.”

The CHOC Children’s Vascular Anomalies Center brings together pediatric specialists in hematology, plastic surgery, head and neck surgery (ENT), cardiology and more to assess and treat all forms of vascular anomalies and malformations in children. For more information, call 714-509-3313.

CHOC’s new pulsed dye laser is generously supported by the Nora and Charles Hester Endowment for Craniofacial Care.

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.

A Teenager With Epilepsy: Stephen’s Story

In Recognition of Epilepsy Awareness Month, we spoke with a teenager with the condition to learn more about life with epilepsy, and what advice he would offer a newly diagnosed patient.

Stephen Moore

Stephen Moore swallows eight pills daily, avoids heights and contact sports, and pays close attention to his body’s cues. This routine, combined with the care of CHOC Children’s specialists, has helped keep the 15-year-old seizure-free since his epilepsy diagnosis three years ago.

Stephen is one of 2.5 million Americans with epilepsy, a neurological condition wherein abnormal electrical activity in the brain can cause seizures, convulsions or sensory disturbances.

He was diagnosed at age 12 after experiencing a seizure one Sunday afternoon while watching a football game on television with his parents.

“I got up, took a step forward and collapsed on the ground,” he says. “My parents wanted to know if I was alright and what was going on. I could hear them, but I couldn’t respond. It was like the muscles in my jaw just weren’t there and I couldn’t move them.”

An ultimate epilepsy diagnosis and subsequent care plan was at first confusing and distressing for Stephen.

“I got the feeling that all kids who are newly diagnosed get,” he says. “Your heart sinks. You hear, ‘You can’t do this, you can’t do that,’ and it’s like, ‘What am I supposed to do?’”

For Stephen, the “can’ts” include activities that involve heights, like rock climbing or a pool’s high-dive. He can’t swim alone and must always wear a helmet while bicycling – good advice for everyone – and he must also pass on contact sports, like football.

For the then 12-year-old Stephen, these restrictions at first seemed insurmountable.

“It was very depressing,” he said. “But I’ve gotten through it. It took some time, about two months after I was diagnosed.”

Now, three years later, Stephen has mostly made peace with his condition, which could become life-long. His advice to newly diagnosed patients would be to listen to their bodies’ needs and talk to people about the condition. These measures help him maintain both physical and emotional health.

“At first, I was afraid to talk to anyone,” he said. “I don’ t know if I didn’t want people to know or I just didn’t want to think about it myself, but I learned that you definitely need to talk about it, otherwise you’ll bottle that up.”

A freshman in high school, Stephen is enrolled in honors and AP courses and particularly enjoys Spanish class. His teachers and a few friends know about his condition, but he doesn’t let epilepsy and the threat of another seizure rule his life.

“I don’t worry about that,” he says. “I know I have it and seizures can happen, but I don’t think about it because it does me no favors.”

Learn more about CHOC Children’s comprehensive epilepsy program.