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Nemours Children’s Health, Delaware Valley

Teamwork and Expertise: Karinda’s Story

Diagnosed with microtia at birth, Karinda’s hearing was immediately tested. The results confirmed that she had hearing loss due to bilateral microtia and atresia. Microtia is a congenital condition where the outer part of the ear (the pinna) is smaller than normal and may have an unusual shape. In bilateral cases, both ears are affected. After spending 8 days in the NICU, Karinda was transferred to Nemours Children’s Hospital, Delaware where her family first met the team that would guide them through a long-term care journey. From the start, it has been a collaborative effort among expert Nemours Children’s specialists to provide Karinda with the best possible care. Now 8 years old, the most recent step in Karinda’s treatment has been ear reconstruction surgery. This procedure has brought together Nemours physicians from across the country including Dr. Angelo Leto Barone from Orlando and Dr. Mario Aycart from Delaware. Karinda has […]

RCDP Awareness Day: Maddie’s Story

The day Maddie was born, doctors performed an X-ray to investigate fluid in her lungs. During this X-ray, they discovered signs of Rhizomelic Chondrodysplasia Punctata (RCDP). This rare condition, which affects bone growth and can lead to orthopedic and developmental challenges, was confirmed a few weeks later through bloodwork. With the help of Nemours Children’s Hospital, Delaware pediatric specialists and cutting-edge research, Maddie and her family have found a community that understands and supports them. “We were introduced to Nemours Children’s in 2017 by RhizoKids International,” shares Maddie’s mom, Jenna. “Through this partnership, we connected with the Nemours team and specialists focused on RCDP. This led to our involvement in the development of the RCDP Natural History Study, an important step in preparing for clinical trials of synthetic plasmalogen.” Maddie and her family have been actively involved in the RCDP Natural History Study conducted at Nemours, attending visits every six […]

Rocco’s Journey with Nemours Children’s (In Mom’s Words)

We were at our favorite skate park with friends when my son, Rocco, fell off his skateboard and hurt his leg. We headed straight to the ER, where we found out that Rocco had a closed triplane fracture of his right ankle. While in the ER, they also noticed his blood pressure was high. My first thought was, ‘He just broke his ankle, of course it’s high.’ But the nurse insisted that we make a follow-up appointment with his pediatrician. After a few days of Rocco being home, we checked his blood pressure, and it was still very high. So, we made an appointment with the pediatrician. Rocco’s father was 13 years old when he went into kidney failure. Because of this family history, I asked them to do a full kidney workup on Rocco. A day later, we received a phone call asking us to go to our local […]

MPS Awareness Day: Eddie’s Story

Eddie has been a patient at Nemours Children’s Hospital, Delaware since he was just 2½ years old. Now 21, he’s spent nearly two decades navigating Morquio A syndrome and making trips to Delaware from Wisconsin to receive the care he needs. His journey began when his parents noticed developmental differences. “I was 2 years old, and my mom started worrying about my chest bone because it looked abnormal,” shares Eddie. For the next nine months, his family saw many different doctors to seek answers. Finally, they discovered a doctor who immediately recognized his symptoms and diagnosed Eddie with Morquio, and recommended they see Dr. William Mackenzie at Nemours Children’s. Morquio A syndrome (also known as mucopolysaccharidosis IVA or MPS IVA) is one of a group of disorders called mucopolysaccharidosis (MPS). In MPS, there’s either not enough of the enzyme that breaks down a type of sugar called glycosaminoglycans (or mucopolysaccharides) or none at all. […]

OI Awareness Week: The Benyo Family

When Carrie Benyo’s femur broke at just eight weeks old, her family wasn’t surprised. Osteogenesis Imperfecta (OI) ran in their family, and Carrie quickly became familiar with the challenges that came with it—multiple fractures and the need for specialized care. So when her daughter, Vaeda, was born, Carrie didn’t wait for the first fracture to seek answers. Through cord blood testing at birth, Vaeda was diagnosed with OI Type 1 when the results came back just four weeks later. Determined to find the best care for her daughter, Carrie discovered Nemours Children’s Hospital, Delaware, a nationally recognized leader in OI treatment. “I wanted the best specialists I could find for her,” shares Carrie. What started as a search for Vaeda’s care soon became a turning point for Carrie, too. “When they said they could treat me too I started seeing them as well. Before that I did not have routine […]

Making a Comeback: Cole’s Story

For 14-year-old Cole, sports have always been a huge part of life. Whether it’s football, wrestling, basketball, or lacrosse, he thrives on the competition and camaraderie of being part of a team. But with one play, Cole’s season was brought to an abrupt halt. “I was playing football, went to make a tackle, and my knee buckled,” Cole recalls. His coaches and the team mom suspected right away that it was his ACL. An MRI confirmed their fears—Cole had torn his ACL and meniscus, injuries that would require surgery and months of physical therapy. Cole’s family knew exactly where to turn. As a baby, he had spent time in the NICU at Nemours Children’s Hospital, Delaware, so when it came time to find expert care for his knee, Nemours Children’s was the clear choice. Under the care of Dr. Su and his team, Cole underwent surgery that rebuilt his ACL […]

OI Awareness Week: Koa’s Story

When Viana first walked through the doors of Nemours Children’s Hospital, Delaware, she felt something she hadn’t in days: relief. Her son, Koa, had been diagnosed with osteogenesis imperfecta (OI), a rare genetic disorder often called “brittle bone disease.” Before Koa was even born, doctors warned Viana that his chances of survival were low. “Almost every doctor I saw just gave me the same answer, that he wouldn’t live,” she shared. But Viana believed in her baby – and found a team at Nemours Children’s who believed in him, too. Now one year old, Koa is doing more than surviving, he’s thriving. Thanks to specialized OI care, bone-strengthening medications, and the compassionate support of his OI team including medical care and orthopaedic care, Koa is living a full and joyful life. Though OI can be life-threatening, new research from Nemours Children’s is shedding light on a more hopeful future for […]

Chasing Dreams: Lizzy’s Story

For 15-year-old Elizabeth, softball has always been more than just a game—it’s a passion. As a high school varsity catcher and a dedicated travel ball player, Lizzy had her sights set on playing at the collegiate level. Then came a play that changed her season. During a game, Lizzy was catching when a runner crashed through her left arm, leaving her with a superior labrum anterior and posterior tear and a small rotator cuff tear. The injury sidelined her, keeping her from the sport she loved and limiting her daily activities. Lizzy was taken straight from the field to Nemours Children’s Hospital, Delaware where initial tests ruled out broken bones. However, with persistent pain and swelling, an MRI was scheduled the following week. The results revealed a labral tear, leading Lizzy to Dr. Alvin Su at Nemours Children’s Health, Deptford. From the start, Dr. Su and his team approached Lizzy’s […]

Finding Support: Frankie’s Story

At just 5 years old, Frankie is already proving that determination knows no bounds. Born with Arthrogryposis Multiplex Congenita (AMC), she has trouble with her joint moving the way it should. But with the expertise of the orthopedics team at Nemours Children’s Hospital, Delaware – including Dr. Jennifer Ty for upper extremities and Dr. Reid Nichols for lower extremities – Frankie has gained strength, confidence, and the tools she needs to thrive. During her mother, Lindsay’s, 11-week ultrasound, doctors noticed an unusual positioning of Frankie’s arms. This was a moment that changed everything for Lindsay and her family. “The rest of the day is a blur,” Lindsay shares. “We started genetic testing, but there were no solid answers. It was very overwhelming.” Uncertainty followed Lindsay and her family throughout the pregnancy, with no definitive diagnosis until Frankie’s arrival. But one pivotal meeting at 36 weeks helped to ease some of […]

Navigating Vocal Cord Dysfunction: Emma’s Story

At 13 years old, Emma keeps a packed schedule. She’s a multi-sport athlete, playing field hockey and lacrosse and running track. All sports that require endurance, strength, and, of course, strong breathing. But in the summer of 2024, during a track meet, Emma found herself struggling to catch her breath. Emma had experienced breathing issues before and had even been treated for asthma as a child. But this time, things felt different. So, her family turned to a place they knew and trusted: Nemours Children’s Hospital, Delaware. “We’ve been going to Nemours Children’s since Emma was little,” says her mom, Melissa. “Even though we don’t live super close, we’ve always been happy with the care we’ve received there. We continue to go back when we need care beyond what our family doctor can provide.” Emma first saw the pulmonology team at Nemours, but after a thorough evaluation, they suggested the […]

Donate Life Month: Piper’s Story

When Piper was just a year old, her parents, Chris and Erin, noticed something unusual—she woke up one morning with a puffy face. Concerned, they took her to Nemours Children’s Hospital, Delaware, where doctors quickly determined there was a kidney issue. What followed was a long and complex journey to find the right diagnosis. After weeks of testing, Dr. Tapia identified Piper’s condition as Denys-Drash Syndrome—a rare and serious kidney disorder with only about 250 known cases worldwide. For the next seven months, Piper underwent treatment, but as her disease progressed, her family faced a difficult decision. To prevent the development of Wilms tumor—an almost certain outcome of Denys-Drash—it was decided Piper’s kidney would be removed under the care of Dr. Stephen Dunn. By December, she received a life-changing gift: a kidney transplant from her dad, Chris. “Dr. Dunn is a gift from God,” says Chris. “He gave our daughter […]

It Takes A Village: Gabriella’s Story

In October 2016, three-year-old Gabriella’s and her family’s world changed in an instant. She was diagnosed with rhabdomyosarcoma, a type of cancer that affects soft tissue. For her parents, Melissa and Shawn, time seemed to stand still. “So many emotions to describe that minute and the minutes, days, hours, weeks, months, and years since…” Melissa shares. But as they look back, their focus is on gratitude—on the people who stood beside them, the care that lifted them up, and the hope that carried them forward. Gabriella’s journey began under the care of Dr. Thacker, orthopedic surgeon at Nemours Children’s Hospital, Delaware. “We remember the words he spoke to us,” Melissa recalled. “But more importantly, we remember that his tone and demeanor were filled with sympathy, concern, and hope.” From the very beginning, Dr. Thacker was more than a physician—he was a constant source of support. Through chemotherapy, amputation, infections, and […]

Page 2 of 10

Page 2 of 10

Page 2 of 10