In high school, Morgan Quintanilla thought she wanted to be a nurse, but after a clinical rotation during her certified nursing assistant (CNA) program, she changed her mind. Instead, she went to the University of Mount Olive and graduated with a bachelor’s degree in business management. An internship with Chick-Fil-A led to a six-year career in leadership with the chain.
“Then I got a spark,” Morgan said. “I thought, let me try to be an RN again, so I got into a program but didn’t do well.”
Still undeterred, Morgan opted for a licensed practical nurse (LPN) program, which she completed in August 2021. During that time, she also married her husband Juan and got pregnant with twins.
That November, however, Morgan went into pre-term labor at 28 weeks and delivered two girls: Leah and Mia. Mia passed away, and Leah spent 65 days in the Neonatal Intensive Care Unit at Maynard Children’s Hospital before discharging home.
“When I was pregnant, I had no desire to go back to school,” Morgan said. “But sitting in the NICU, I realized I wanted to serve in that role. I wanted to work where I could help parents experiencing the same thing I did, and work beside the people who made me feel comfortable and cared for. A nurse told me only RNs can work in the NICU, so I applied for an LPN to RN program sitting next to my baby’s bed.”
Leah was discharged in January 2022, and Morgan began RN program that May. When she graduated from the year-long program in August 2023, she immediately found a job with the NICU.
“As soon as I stepped foot in that NICU, I knew this is where I needed to be,” she said. “My heart was fulfilled again. I was where both my babies had been alive, and I get a lot of comfort from that.”
Morgan said this experience was a classic example of taking something bad and turning it into something good.
“I can let other parents know that I’m both a NICU mom and a NICU nurse,” she said. “I know what it’s like to have a survivor and a loss. When they hear that, there’s this sense of relief that we’ll get through this together. I want to make sure the parents, especially those who experience a loss, are advocated for.”
She also said her pursuit of nursing feels meant to be.
“I would never wish for this to have happened,” she said, “But if it hadn’t, I wouldn’t be an RN now. In high school, I just had this intuition I wanted to be a nurse, but I wasn’t sure how I would get there. This was my calling and I’m lucky to have found it.”
Share your story with us at go.ecuhealth.org/gratitude. Stories like these show the lasting impact of Maynard Children’s Hospital.
Class is back in session, and ECU Health wants every student in eastern North Carolina to have a safe, healthy, successful school year. To help make that happen, experts from across the health system recommend parents help their K-12 students get adequate sleep, maintain a steady routine, eat nutritiously and have a positive attitude that will help ease unnecessary stress.
According to Virginia Marr, a school health nurse care manager at ECU Health who serves as a school nurse with Pitt County Schools, getting into a healthy routine takes time. She recommends that parents start having children go to bed and wake up earlier before school starts in order to get the sleep their bodies need. Turning off electronics at least an hour before bed is one way to help promote good sleep hygiene, Marr said.
Marr added that packing lunches the night before helps reduce any need to rush in the morning, and that younger children can even practice their full routine from waking up to being at the bus stop to ensure they are confident and informed about what to do.
“It’s difficult when kids get back into a routine, especially when they have been off for a whole summer,” Marr said. “Things go from calm to structured, so seeing their parents have a positive attitude always helps kids start their day off right and sleep easier at night. Give yourself, and your student, a little grace.”
Dr. Kelli Long, a licensed psychologist at ECU Health who works with pediatric patients, agreed that establishing predictable routines and having a positive attitude go a long way for both students and their parents. Offering praise and positive reinforcement for behavior is important too, she said. She also recommended that parents keep conversations focused on what kids can be excited about, rather than what parents are worried about, to ensure students are going into the school year on the right foot.
“Attending an open house to meet teachers, explore the school building, and find friends can go a long way,” Dr. Long explained. She encouraged parents to talk positively about what their student can look forward to, like seeing friends or going to recess, to give kids something to be excited about as they return to school. “Parents have a huge impact on their kids’ mental and emotional well-being, so the more that parents can stay positive about those things, the better.”
Healthy meals are also a space where parents can help their kids at school, according to Madison Carson, a clinical pediatric dietitian supervisor at James and Connie Maynard Children’s Hospital at ECU Health Medical Center. She said starting the day off with breakfast, whether that’s milk and cereal, a full spread of pancakes and sausage, or similar, will set kids up for a productive day. She said lunches should contain protein, a starch or grain, a fruit or vegetable and something fun like a kid’s favorite drink or a small treat.
“As we’re going back to school, we want to prepare our children and make sure they are filling their bellies so they are fueling their minds so that we can have a good school year,” Carson said.
By focusing on healthy routines, restful sleep, nutritious meals and a positive mindset, families can help students feel prepared and supported as they return to the classroom. With a little planning and encouragement, children across eastern North Carolina can start the school year with confidence and build habits that support their success all year long.
For one week each summer, Camp Needles in the Pines transforms a traditional summer camp experience into something much more meaningful for children living with Type 1 diabetes. Located at Camp Boddie in Blounts Creek, campers spend their days kayaking, swimming, climbing, creating crafts and making lifelong friendships. Unlike most summer camps, however, every child at Camp Needles in the Pines shares a common bond: managing Type 1 diabetes.
Founded in 1985, Camp Needles in the Pines serves children ages 8 to 14, while older teens participate as counselors-in-training before eventually becoming counselors themselves. The camp is supported through a partnership between the Brody School of Medicine at East Carolina University, ECU Health and ECU Health Foundation, with funding assistance from Children’s Miracle Network and community donors.
For Camp Director Mindy Saenz, a registered dietitian and diabetes educator with ECU Health Pediatric Specialty Care, the camp’s impact extends far beyond outdoor activities and summer fun.
For Camp Director Mindy Saenz, a registered dietitian and diabetes educator with ECU Health Pediatric Specialty Care, the camp’s impact extends far beyond outdoor activities and summer fun.
“A lot of the kids might be the only one in their whole school who has Type 1 diabetes,” Saenz said. “Here at camp, every single camper has Type 1 diabetes. Everybody counts carbs together, gets insulin together and understands exactly what everyone else is going through.”
This year, 51 campers from across North Carolina – and even one from Texas – attended camp. Throughout the week, they participated in activities including paddleboarding, archery, rifle and shotgun shooting, arts and crafts, STEM projects, ecology programs and a traditional camp talent show.
While camp looks like a typical summer camp on the surface, extensive planning ensures every camper can safely participate.
“The biggest thing is making sure we have enough medical staff,” Saenz said. “Each group has a medical staff person assigned to be with them at all times.”
Camp leaders also coordinate donated insulin, blood glucose testing supplies, glucose treatments and other medical necessities. Daily diabetes education and nutrition classes are woven into the schedule, helping campers build confidence in managing their condition.
Perhaps most importantly, campers are encouraged to celebrate milestones. Whether it is checking their blood sugar independently for the first time or changing an insulin pump site on their own, each achievement is recognized in front of fellow campers.
“We announce it and everybody cheers,” Saenz said. “It’s really about fostering independence and helping them realize they can do these things themselves.”
That sense of support and belonging is what keeps many campers coming back year after year.
Madelyn Sutter knows that feeling well. Now 18 and serving as a counselor-in-training, she has attended Camp Needles in the Pines since she was 8 years old.
“At home, my only experience was my sister also being Type 1,” Sutter said. “There was no one else in my school or sports. Being at camp, everyone is the same for once. Everyone has diabetes and everyone’s going through the same thing.”
Today, she enjoys helping younger campers navigate challenges she once faced herself.
“A lot of them have that same experience where there’s no one at home that’s going through the same thing as them,” she said. “I remember being their age, so I can help them get through whatever’s going on.”
Sutter said the community campers find at Camp Needles in the Pines is unlike anything else.
“It’s my favorite week of the year,” she said. “I count down the days.”
For 16-year-old counselor-in-training Kade McLawhorn, the relationships built at camp are the reason he returns every summer.
“It’s just the people,” McLawhorn said. “Year after year, having the same people you can hang out with and bond with. Sometimes we don’t get to see each other that much, but at least once a year we come together and make some great memories.”
In addition to supporting campers, Camp Needles in the Pines provides a unique learning environment for future health care providers. Dr. Caleb Oakley, a fourth-year Internal Medicine-Pediatrics resident at
ECU Health volunteered at camp this year while completing a pediatric endocrinology rotation.
“In the hospital, things are very black and white with protocols,” Dr. Oakley said. “When you come to camp, you get to see the art of medicine and how individualized diabetes care really is.”
Working alongside campers allowed Dr. Oakley to gain experience with insulin pumps, continuous glucose monitors and the day-to-day realities of living with diabetes.
One of the moments that left the biggest impression on him was watching campers reach personal milestones.
“You can see how proud they are of themselves,” he said. “They’re away from home, outside their comfort zone, and taking big steps in managing their own care.”
Beyond the clinical experience, Dr. Oakley said camp also showed him the importance of community for children living with Type 1 diabetes.
“One thing I underappreciated before coming here was how different it can feel being a kid with Type 1 diabetes,” he said. “At camp, they’re not outsiders. This is the norm. They get to just be kids.”
For Saenz, that feeling of belonging remains at the heart of Camp Needles in the Pines nearly four decades after its founding.
“It’s really about being with other people who understand,” she said. “The friendships they build here last a lifetime.”
Children and seniors are at particularly high risk of heat-related injury if they are left in a hot car, even for a short time. ECU Health’s Center for Child and Family Wellness Eastern Carolina Injury Prevention Program, the N.C. Governor’s Highway Safety Program, Martin-Pitt Partnership for Children and Safe Kids Pitt County gathered to demonstrate that parked vehicles and hot weather can be a deadly combination for people stuck inside.
“Children heat up three to five times faster than adults and cannot cool themselves down as quickly,” said Ellen Walston, injury prevention program coordinator and Safe Kids Pitt County coordinator at ECU Health. “Seniors’ body temperature also regulates slower. Cracking your windows or leaving them down does not help, despite popular opinion. That is why it’s so important that you never, ever leave a child or a senior in a vehicle unattended, even for a minute.”
Walston said that 50 North Carolina children have died in hot cars from 1998-2025. At the demonstration, pairs of children’s shoes were displayed on a table to illustrate that total.
Also on display was a police vehicle with a temperature gauge depicting the temperature inside and outside of the vehicle. On an unseasonably cool summer day in the mid-80s, even as the temperature outside dipped and rose the air inside the car continued a steady climb to eclipse 130 degrees. Walston said that on a hot day, temperatures inside a parked vehicle rise 20 degrees in a span of ten minutes and continue to rise.
Walston said nationwide more than 50 percent of child deaths in hot cars happen because kids are forgotten in vehicles. Leaving an item like a backpack, cellphone or something else you will remember can serve as a good reminder to check your backseat.
About 17 percent of deaths occur when children are intentionally left behind, Walston said. The remaining deaths come from children gaining access to, but being unable to escape from, a hot vehicle.
“No amount of time, whether it is a trip inside the store or the bank or whatever it may be, is a safe amount of time to leave a child unattended,” Walston said. “When you are at home, lock your vehicle so kids cannot play inside. Small steps can make a big difference when it comes to keeping our children safe.”
An unprecedented illness that started with stomach pain and spiraled into multi-system organ failure proved to be a defining experience in Kayla Jordan’s young life. Looking back, 14 years later, the now 20-year-old Jordan said it also shows how team members at James and Connie Maynard Children’s Hospital at ECU Health Medical Center gave a scared little girl in an extended stay hope, support and the chance to just be a kid.
In 2012, Kayla, then six years old, was taken to her pediatrician in Beaufort County for vomiting and stomach pain. She and her mother, Rebecca Williamson, were directed to the emergency department across the street where tests revealed that Kayla had an inflamed pancreas. As her condition rapidly deteriorated, an EastCare team transported her to ECU Health Medical Center for advanced treatment.
“I was going downhill pretty fast. They put tubes in my nose that night and then sent me to Greenville,” Kayla said. “From there on out, I was pretty sick for about a month.”
In Greenville, a care team told Rebecca that her daughter had necrotizing pancreatitis, where severe inflammation can kill tissue in a person’s pancreas. They said 50 percent of the tissue in Kayla’s pancreas was already dead. Soon after, Kayla’s organs began to shut down. She was placed in a medically induced coma because her pain was so unbearable. Her family had a chance to say goodbye, just in case, before she went under.
Rebecca, an assistant nurse manager at ECU Health, was shaken. Her instincts as a mother overrode her education as a nurse.
“It’s funny, you can be a health care professional and your kid or your loved one or someone you’re close to gets sick and suddenly, it feels like you know a lot about nothing,” Rebecca said.
Pediatric physicians worked tirelessly to determine how a 6-year-old could possibly contract a condition typically seen in older adults with a history of alcohol use. They consulted with infectious disease doctors at the hospital and on the other side of the country, performed genetic testing and ran an array of viral tests to determine the best course of treatment. It took time, but tests determined that Kayla had contracted mycoplasma pneumoniae, the bacteria that causes walking pneumonia. The bacteria had completely bypassed Kayla’s lungs and instead attacked her pancreas.
Andy Williamson, Kayla’s stepfather and an ECU Health nurse practitioner, said the diagnosis was unprecedented.
“That is unheard of, but once they identified the bug, they could treat it,” Andy said. “As soon as we got the right antibiotics on top of it, you could start seeing Kayla improve.”
The medicine worked and, astonishingly, Kayla did not require surgery. She soon began her month-long road to recovery at Maynard Children’s Hospital, where in addition to her medical care, she participated in pet therapy, received tutoring and schoolwork to prevent her from falling behind in her classes, and progressed through physical therapy to recover her strength. Friends from school wrote her cards, and her teachers even came to read to her.
“I remember we celebrated the day that she made it all the way down to the little playroom,” Rebecca said. “She borrowed my husband’s credit card so she could play shop. There were so many things to help her feel like a kid.”
For her mom, the patient- and family-centered model of care was apparent. She also felt valued as a team member.
“They provided everything that my kid needed, not just for her health but for her mental state,” Rebecca said. “There were coloring books and crayons, playrooms and a pool and pet therapy.”
Rebecca’s ECU Health team also supported her during Kayla’s hospital stay.
“My nurse manager would come to check on me and ask if I needed anything,” said Rebecca. “They helped submit paperwork to get me started on my leave of absence. It was nice. I didn’t have to worry about my job and could worry about my child. I was treated like I was a family member of the hospital.”
Kayla celebrated her 20th birthday in February. She is now a rising senior at East Carolina University, where she helps broadcast Pirates athletics on ESPN+ and plans to pursue a career in sports broadcasting. She said she was a “frequent flyer” for many years at the emergency department as she dealt with stomach issues. She also recently had her gallbladder removed, a result of the pancreatitis she fought more than a decade ago.
“She’s so resilient,” Andy said. “Not many 18-year-olds get their gallbladders out. She continues to do so well, does well in school. She’s a very smart girl and she’ll do well. We’ll be there for her, like we always have been.”
For Kayla, it’s comforting to know that ECU Health team members are there to support her, whether that’s at home or elsewhere.
“Every time I’ve had to go to the emergency department or something like that, they were always very thorough with me, and they always took my past into consideration,” Kayla said. “There has been peace of mind for me and my mom, who always went with me. It always felt like a family environment.
“As a little girl, you don’t really understand what’s happening,” she continued. “Everyone still went above and beyond to make me feel like I was a normal kid. Looking back now, it shows that, for one, medicine is awesome, and secondly that having people who are right there with you the whole time makes a huge difference.”
For more than four decades, Camp Rainbow and Camp Hope have given children with serious health conditions something rare: the chance to simply be kids.
Camp Rainbow, which began in 1982, and Camp Hope, established in 1991, serve children across eastern North Carolina with complex medical needs. Camp Rainbow welcomes children with cancer, hemophilia and other chronic bleeding disorders, while Camp Hope is designed specifically for children with sickle cell disease.
Behind the scenes, a dedicated team from ECU Health and the Brody School of Medicine at East Carolina University’s Pediatric Hematology/Oncology division, comprised of nurses, physicians, child life specialists, social workers and volunteers ensures campers are supported around the clock.
“This is a week where they can step away from hospitals and clinics,” said Tamika Mackey, child life specialist at the Pediatric Hematology/Oncology Clinic at ECU Health and the Brody School of Medicine at East Carolina University and director of Camp Hope and Camp Rainbow. “They still take their medications, and we have 24-hour medical care available, but more importantly, they get to just be kids.”
This year, 56 campers joined for the week. While many arrive feeling nervous or unsure, that hesitation quickly fades.
“At the beginning, they’re a little nervous about being away from home,” Mackey said. “But by midweek, you can see the change. They’re having fun, making friends and trying new things.”
That transformation is one of the most powerful parts of the experience. Throughout the week, campers participate in activities like canoeing, paddleboarding, horseback riding, arts and crafts and challenge courses. New this year, a “Medals of Honor” program recognized campers for kindness, respect and helping others, reinforcing a sense of community and encouragement among peers.
But beyond the activities, it’s the connections that matter most.
For many campers, this is the first time they’ve met someone else living with the same condition.
“A lot of our campers come from rural eastern North Carolina where there aren’t many – if at all – kids going through the same diagnoses as them,” said Mackey. “It means a lot to them. They can talk about their experiences, their treatments, their time in the hospital. They realize they’re not alone.”
That sense of belonging is what keeps campers coming back, even long after their time as campers ends.
Landon Cherry, 17, has attended Camp Hope for years and says each summer offers something new.
“The people are great, the counselors are great, and every year feels like a new experience,” he said.
“You get new bunkmates, new friends.”
For Cherry, who has sickle cell disease, the camp provides something he can’t always find at home or school.
“We can relate to each other,” he said. “Everyone here has something different, but we understand what each other is going through.”
Whether swimming in the lake, participating in activities or simply spending time together, those shared experiences create strong bonds.
“You come here, and you can just have fun,” Cherry said. “That’s the best part.”
For some, the camp’s impact extends beyond childhood. Many volunteers were once campers themselves, returning to give back to a program that shaped their lives.
Jacy Gibbs, 20, first came to Camp Rainbow at age nine after being diagnosed with cancer. She immediately found a sense of connection and a sense of purpose.
“It felt reassuring to know there were other people like me,” she said. “Even though I had support around me at home, I still felt alone sometimes. Camp gave me a place where I didn’t have to think about that. I could just be normal.”
After attending as a camper for eight years, Gibbs is now in her third year as a counselor, fulfilling a goal she set for herself during that very first summer.
“I remember standing up on the last night of my first week of camp and saying I wanted to be a counselor one day,” she said. “Now I get to be that person for someone else.”
Today, she sees firsthand the same transformation she once experienced.
“It’s really special to watch the kids make connections and build friendships,” she said. “It brings out that inner child in me again.”
As a cancer survivor and college student at East Carolina University, Gibbs also recognizes the importance of being a visible example for campers.
“It means a lot to show them what’s possible,” she said. “That they can get through it and still live their lives.”
For Mackey, those full-circle moments are among the most meaningful.
“They want to come back and help the younger kids,” she said. “They want to encourage them to try new things, to build confidence, to feel supported.”
That support can even extend into medical milestones. Mackey noted that some campers gain the confidence to take medications independently after seeing their peers do the same — a small but meaningful step in their care journey.
Ultimately, Camp Rainbow and Camp Hope are about much more than a week away. They are about building confidence, fostering independence and creating lifelong connections, all while reminding children that their diagnosis does not define them.
“They come here unsure,” Mackey said. “But they leave with friendships, confidence and memories that stay with them long after camp ends.”
Camp Rainbow and Camp Hope are offered free of charge to children with chronic illnesses and were made possible this year by generous support and donations to the ECU Health Foundation and from
Children’s Miracle Network, the Pamlico Neuse Women’s Coalition, the James and Mamie Richardson Perkins Trust, the Mildred Sheffield Wells Charitable Trust, Jalen’s Nation, Beau’s Buddies and other individuals and civic organizations.
Dr. Shannon Longshore has built her career around a simple but powerful belief: children deserve honesty, compassion and the very best care medicine can offer. In her many roles across the pediatric medicine community, that patient-focused approach is making a major impact.
Recently named Senior Medical Director and Surgeon in Chief at James and Connie Maynard Children’s Hospital at ECU Health Medical Center, Dr. Longshore also serves as Division Chief of Pediatric Surgery at the Brody School of Medicine at East Carolina University, medical director of Pediatric Trauma since the program’s inception, and medical director of the Eastern Carolina Injury Prevention Program (ECIPP).
For more than 13 years, Dr. Longshore has been a cornerstone of the pediatric surgery community in eastern North Carolina, guiding families through some of the most frightening moments of their lives, performing lifechanging operations, and helping shape the future of pediatric care at ECU Health.
Dr. Longshore earned her medical degree at the University of Tennessee Health Science Center in Memphis. She went on to complete a general surgery residency at the University of California, Davis in Sacramento, followed by a research fellowship at Washington University in St. Louis, and ultimately a pediatric surgery fellowship at Loma Linda Children’s Hospital in Loma Linda, California. She is board certified in both General Surgery and Pediatric Surgery, bringing nationally recognized expertise to the region’s only children’s hospital.
For Dr. Longshore, technical skills are only part of the story.
“I love the idea of having a problem and being able to fix it,” she explained. “Most pediatric surgeons will tell you the congenital anomalies – babies born without their esophagus connected – those are the cases we love to treat the most. You do that operation, and they go on to live a pretty normal life. That feels amazing.”
If you ask Dr. Longshore what keeps her grounded in such a demanding specialty, she will tell you it’s the kids.
“Kids just want to get better,” she said. “There’s no secondary gain for them. They want to get back to playing, back to school, back to being themselves.”
Erika Greene, trauma program manager at Maynard Children’s Hospital, said Dr. Longshore’s leadership is nothing short of extraordinary.
“Even after reaching the highest level of pediatric trauma verification, Dr. Longshore never stops looking for ways to grow our program,” Greene said. “She continues to strengthen our pediatric trauma resources, expand our team and ensure we have pediatric expertise at the bedside the moment patients arrive.”
When Dr. Longshore stepped into leadership of ECIPP, the program was much smaller in scope. Over time, her vision and persistence helped elevate them into nationally recognized efforts.
“She has really helped take us to the next level,” said Sue Anne Pilgreen, manager of ECIPP and ECU Health’s Pediatric Asthma Program. “She’s been incredibly intentional about helping us pursue grant funding, supporting research and encouraging publications and presentations.”
That support has translated into meaningful growth and visibility.
“For example, we had two presentations accepted at the Pediatric Trauma Society meeting last year,” Pilgreen said. “That’s a very big deal and having two accepted was an even bigger accomplishment. She played a huge role in helping us get there and making sure we had a seat at the table.”
Pilgreen also credits Dr. Longshore as a consistent advocate for prevention initiatives.
“She was involved at every level,” Pilgreen said. “Whether it was meeting with leaders, supporting new initiatives or going into schools with us, she’s always been willing to show up and do the work.”
That hands-on, “boots on the ground” leadership style, combined with strategic vision, has helped grow the program from a small team into a comprehensive effort focused on child safety across the region. ECIPP has reached thousands through prevention efforts, including more than 3,000 individuals in mental wellness initiatives and over 2,600 people through firearm safety programs in 2025. The program also plays a critical role in reducing preventable injuries through traffic, pedestrian and passenger safety efforts, reaching more than 3,200 individuals in 2025 through occupant protection initiatives and supporting environmental improvements that make roads safer for the community.
“It’s taken our program from being great to something truly exceptional,” Pilgreen said.
Dr. Longshore is quick to emphasize that exceptional pediatric care is never a solo effort. It’s the product of a deeply collaborative environment.
“When you interact with child life, or our therapy dog, Sam, our anesthesia team or our nursing team, that’s their mission: to make this the best possible experience for kids,” she said. “Nobody wants their child to have surgery, but it’s our job to make it the best experience we can.”
After more than a decade in Greenville, Dr. Longshore is beginning to see the lasting impact of her work.
“It’s a small community,” she said. “You start taking care of siblings. You run into families at swim meets. Someone will point to a child and say, ‘You operated on him.’”
Her own children were swimmers, and she recalls a moment when a parent approached her on the pool deck to share how far their child had come since surgery.
“As surgeons, we don’t always get that long term follow up,” she said. “To see a child you operated on swimming next to your daughter, that’s the cool part of this job.”
As Surgeon in Chief, Dr. Longshore now plays a pivotal role in shaping the vision and culture of Maynard Children’s Hospital. Her leadership blends clinical excellence with a commitment to ensuring that every child and family who walk through the doors feels seen, supported and cared for.
“She’s never satisfied with ‘good enough’—she always wants to do better,” said Greene. “She always wants to do more, to be better, to serve children in every way possible. You couldn’t place a more perfect person in the role of chief of Surgery.”
“I had a perfectly normal pregnancy and delivery,” Rebekkah Rostek said of her daughter Gemma’s birth. “Then the week of her first birthday, she had her first seizure.”
That terrifying moment sent the Rosteks to their local hospital in New Bern, but they were quickly transferred to ECU Health Maynard Children’s Hospital when Gemma’s seizures didn’t stop.
“She had what’s called clustering seizures, and she had maybe 50 of them in the time between going to the hospital in New Bern and arriving at Children’s,” Rebekkah recalled. “She was taken to the PICU, and they thought she had an infection.”
The doctors tested Gemma for a multitude of illnesses, but nothing quite added up. Her symptoms resolved, they sent her home in time to celebrate her first birthday and she did well – for a while.
Uncovering the cause
Six months later, Gemma again experienced clustering seizures. Back at Children’s Hospital, the Rosteks met Dr. Ahmed Ibrahim a pediatric neurologist.
“He suggested genetic testing based on Gemma’s symptoms, and that’s when we discovered she had a rare genetic epilepsy disorder called PCDH19.”
The PCDH19 gene makes a protein involved in cell-to-cell signaling, and mutations can cause clustering seizures, developmental challenges and neurological complications. While the diagnosis was frightening, Rebekkah said it also gave her and her husband information they needed.
“Dr. Ibrahim’s recommendation changed the course of our daughter’s care forever,” Rebekkah said.
“It allowed us to better understand Gemma’s condition and how to advocate for the specialized care she needs. Dr. Ibrahim’s knowledge, attentiveness and compassion have meant more to our family than words can fully express. I’ve never met a doctor of his caliber.”
With a diagnosis in hand, Rebekkah said they are now empowered to help Gemma when seizures happen.
“We know what to look for and we feel prepared. We have emergency medications we can administer at home, but if Gemma starts clustering, we seek medical treatment at the hospital,” Rebekkah said.
“Since her first seizure, we’ve been to Children’s six or eight times.”
Support every step of the way
“The second we walk through the doors of Maynard Children’s Hospital, there is relief in knowing Gemma is surrounded by people who genuinely care about her well-being and understand the seriousness of her condition,” Rebekkah said. “We know she is safe. We know she is being listened to. We know she is receiving exceptional care.”
That care comes from a variety of teams, from the Emergency Department and general pediatrics to the PICU, dietary services and Child Life specialists.
“We’ve had so many doctors, like Dr. John Biondi, and nurses, like Corbin [Martin] in the PICU, who have been phenomenal,” she said.
Rebekkah said that Maynard’s reminds families they aren’t carrying their burdens alone.
“Anything we’ve needed, down to help with insurance documents and access to the Ronald McDonald House, they’ve relieved the pressure. We want families walking through a similar circumstance to know there is hope. Rare diagnoses can feel isolating, but there is support from those who dedicate their lives to helping children like Gemma.”
She also praised support organizations, such as PCDH19 Alliance, which provides information, funds research and assists individuals with PCDH19 and their families. Having access to that information, and to positive stories from other families like hers, has been a lifeline.
Good days ahead
As for Gemma – she is an energetic almost-four-year-old with a zest for life.
“She loves her older brother, Emmett. She can ride a bike with no training wheels and she loves to swim. She’s a good friend at school and loves her two Golden Retrievers and her cat. She’s so funny and cute as a button.”
Gemma just finished a dance recital, she is taking gymnastics and in November, the family plans a visit to Disney.
The good days are good, and the bad days are bad, but there are more good days than bad ones,”
Rebekkah said. “It’s unpredictable and we don’t take things for granted because we don’t know what the seizures will do.”
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Maybe it’s because of the epilepsy, but Gemma is fearless,” Rebekkah added. “At this point, I just tell her to shoot for the stars and we won’t hold her back. Epilepsy has been a significant part of her journey, but it does not define who she is.”
Share your story with us at go.ecuhealth.org/gratitude. Stories like these show the lasting impact of Maynard Children’s Hospital.
Greenville, N.C. – ECU Health has been awarded $1,497,500 from The Duke Endowment (TDE) to participate in the Maternal Infant Health (MIH) Carolinas initiative, a multiyear effort to improve maternal and infant health outcomes across North Carolina and South Carolina, strengthen care coordination and advance health equity. H.E.A.R. (Healing, Equity, Advocacy and Respect) 4 Mamas and Babies (H4MAB) is a text- and phone-based screening and referral program developed at The Medical University of South Carolina (MUSC) to identify medical, behavioral health and social needs early in pregnancy and throughout the postpartum year.
“ECU Health is proud to serve as a pilot site for this proven maternal health model, allowing us to bring an innovative, evidence‑informed approach to mothers across our 29‑county region,” said Angela Still, executive director, Women’s Services, James and Connie Maynard Children’s Hospital at ECU Health Medical Center.
“By integrating comprehensive, stage‑specific screenings with coordinated nursing and social work support, we can better identify needs early and connect patients with the clinical and community resources that help them thrive. We are excited to collaborate with MUSC and peer programs to advance maternal and infant health outcomes for families throughout eastern North Carolina.”
The model proactively connects participants to timely, trusted services and has demonstrated significant improvements in the detection and treatment of mental health conditions, including maternal depression and anxiety as well as substance use disorders, chronic health conditions, intimate partner violence and unmet social determinants of health needs.
TDE’s investment will support the awarded sites in planning and implementing H4MAB. This includes participation in a peer learning community and access to a comprehensive Technical Assistance and Training Center led by MUSC in collaboration with the University of North Carolina at Chapel Hill. The center provides training, technology, cross-site evaluation and data resources along with ongoing technical assistance to strengthen implementation. It will also collaborate with state agencies, Medicaid programs and private payers to explore long-term reimbursement pathways for program sustainability.
ECU Health is among five health systems TDE selected to form a network aimed at mitigating risk factors that lead to poor maternal and infant health outcomes while ensuring families across the Carolinas receive the timely support they need to thrive. ECU Health will collaborate with local health care providers, public health agencies and community-based organizations to share information about H4MAB and connect families with medical, behavioral health, social support and peer support resources. ECU Health will also convene a community advisory board to provide feedback, identify resource gaps and ensure that implementation reflects local context and community experience.
“We are thrilled to launch this initiative in partnership with MUSC, UNC-Chapel Hill and five health systems,” said Jay Kennedy, senior program officer with The Duke Endowment’s Health Care program area. “Our aim is to work together to replicate and scale this program in hopes of improving health outcomes for more women and infants across the Carolinas.”
Greenville, NC – The 41st annual Children’s Miracle Network (CMN) Celebration Broadcast raised an incredible $1,086,906 to support pediatric care at James and Connie Maynard Children’s Hospital at ECU Health Medical Center, bringing the total raised over four decades to $36.6 million. Thanks to the ongoing support of donors, volunteers and partners, children from across our region continue to receive the highest quality care, close to home.
Produced by longtime CMN partner WITN, this year’s broadcast highlighted the real-life impact of CMN support through heartfelt stories from patients, families and care teams at Maynard Children’s Hospital. The program demonstrated how community generosity helps ensure children throughout eastern North Carolina have access to exceptional pediatric care when they need it most, with a special $100,000 matching gift from a true friend of Maynard Children’s Hospital providing even greater support.
“The generosity displayed during this year’s telethon is a powerful reminder of what our community can accomplish when we come together,” said Elise Ironmonger, director of programs, ECU Health Foundation. “Every donation represents an investment in the health and future of local kids and families. We are deeply grateful to the businesses, organizations, volunteers and individual donors whose support helps Maynard Children’s Hospital provide advanced care, innovative treatments and hope for children throughout eastern North Carolina.”
Funds raised during the Celebration Broadcast ensure that children from across the region have access to the highest quality care, advanced medical equipment and life-saving programs. Each dollar raised stays local to support pediatric services at Maynard Children’s Hospital.
Major sponsors once again demonstrated their generosity, with the following top contributors each giving at least $100,000: Speedway, part of 7-11, Inc ($174,903), Walmart and Sam’s Club ($157,802), Music for Miracles Radiothon ($121,980) and Log A Load for Kids ($100,000).
The following sponsors each made a significant impact with donations totaling more than $20,000: Dance Arts Theatre ($34,814), Panda Express ($26,947) and Extra Life ($21,362).
The following organizations contributed between $5,000 and $20,000: Ace Hardware, American Builders, Barbour Hendrick Honda of Greenville, Dairy Queen, Eastern Radiologists, Miller and Friends Lemonade Stand, Ollie’s, Phi Mu, Pepsi/Minges Bottling Group and Publix.
Additional support came from these generous sponsors who contributed between $1,000 and $5,000: Ajay Ajmera, Arun Ajmera, Beaufort Hardware and Print Company, Builder’s Discount Center, Care-O-World, Grady-White Boats, Harris, Creech, Ward & Blackerby, P.A., RE/MAX, Oasis Shrine, Piratethon, Ricci Law Firm, Stallings Plumbing Heating and Air Conditioning, Valvoline, Walgreens and Wawa.
The local CMN fundraising program is staffed and supported by the ECU Health Foundation, the non-profit charitable corporation that serves as the custodian for all financial gifts and bequests to ECU Health and the colleges and schools of the Health Sciences at ECU. The ECU Health Foundation oversees allocation of all donated funds.