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PATIENT STORIES

Back On Base: Shaun’s Story

Shaun’s journey with Nemours Children’s Health began when his family noticed an unusual bump on his leg while he was sitting on the couch, playing a video game. They took him to see his pediatrician where he was referred to Nemours Children’s. There, he was diagnosed with an osteochondroma on his left femur. An osteochondroma is a common, non-cancerous bone tumor that can develop in the growing bones of children. Despite the diagnosis, Shaun continued to lead an active life playing baseball, a sport he was passionate about. “When we first discovered the osteochondroma, it didn’t hurt him at all,” his mother, Renee recalls. “But as he continued to grow, so did the lump. Eventually, it became so large that it would rub against his thigh muscle whenever he ran, causing him significant pain and forcing him to stop.” This change in his condition was a clear sign that they […]

PATIENT STORIES

Epilepsy Awareness Month: Isaac’s Story

Isaac’s journey with Nemours Children’s Health began after a long search for answers. Around his first birthday, his parents noticed that something wasn’t right. “Isaac was extremely nauseated, underweight, and falling behind developmentally,” his mom recalled. After months of uncertainty, genetic testing revealed a rare diagnosis: SYNGAP1, a condition that affects only about 475 people in the U.S. and roughly 1,500 worldwide. SYNGAP1 causes developmental delays, epilepsy, and autism, making even everyday milestones more difficult. Before coming to Nemours Children’s, Isaac’s seizures were constant and resistant to medication. “His neurologist said it was as if his brain were on fire,” his mom said. “He would just sit and stare off into space most of the day.” At just 3 years old, SYNGAP1 has left Isaac fully disabled, and he is not yet walking or talking. The emotional and physical toll was heavy for his family, who had spent years visiting multiple hospitals and doctors without answers. That changed when […]

Teenager with type 1 diabetes using an app to check his sugar level at home while working on homework

RESEARCH

Managing Depression in Children with Type 1 Diabetes

Managing a chronic condition like Type 1 Diabetes (T1D) is never easy, especially for children and adolescents. It requires constant attention to blood sugar levels, insulin administration, and carbohydrate intake, among many other factors. But there is a lesser known obstacle to this condition that often goes overlooked: mental health struggles, specifically, depression. Alexandra Monzon, PhD, a clinical pediatric psychologist with Nemours Children’s Hospital, Florida, is working to provide targeted mental health interventions for children with T1D. Why Depression is More Common in Kids with Type 1 Diabetes Dr. Monzon explained that T1D is stressful for young patients due to its demanding and constant nature — it requires patients to “be their own pancreas.” The continuous effort to regulate blood sugar through diet and insulin shots can lead to patients being overwhelmed, anxious, and depressed. Dr. Monzon noted that symptoms can overlap and intensify in patients with Type 1 diabetes […]

Finding Answers: Logan’s Story

In April 2024, Logan began experiencing persistent right shoulder pain. What made it particularly confusing was that he hadn’t experienced any recent injuries or trauma. His family, concerned, took him to see his pediatrician, who, after a thorough examination, referred them to a local pediatric orthopedic specialist. Whittney, Logan’s mother, recalls, “When the pain started, Logan was hurting all the time. He kept his arm in a sling for a little over a month, but there was no improvement. He had trouble putting on his own shirt and couldn’t lift a carton of milk. He couldn’t play baseball or do any of the things he enjoyed so it started to affect his mental health.” The local orthopedic specialist was diligent in trying to pinpoint the cause of Logan’s discomfort. Over the course of a month, he ordered a series of lab tests and imaging studies. Despite these efforts, the specialist […]

A New Path Forward: Miguel’s Story

Adopted from Colombia two years ago, Miguel’s congenital limb deformity had left him unable to stand or walk, relying on his knees and a wheelchair to navigate the world. “We were aware of his congenital limb deformity, but we weren’t exactly sure what that would mean for him in the course of his life,” his mother, Jennifer, shares. Life before treatment was a series of adaptations and challenges. Miguel had developed his own way of navigating the world. He would “walk” and crawl on his knees, using custom knee pads to cushion his movements. “He was amazingly active,” Jennifer shares, “but he did have frequent pain and skin issues from ‘walking’ on his knees.” His inability to stand or reach things independently made everyday activities a constant challenge. His family’s resolve to find a solution grew stronger with each passing day. “Because he also has shortened arms, we realized that […]

PATIENT STORIES

Every Step of the Way: Jackson’s Story

When Allison was 21 weeks pregnant, she and her husband, Chris, learned that their son, Jackson, would be born with diastrophic dysplasia, a form of dwarfism. After his birth and spending 37 days in the NICU at their local hospital near their home in Virginia, they began to see specialists for Jackson’s care. “Shortly after learning Jackson’s diagnosis, we connected online with another family whose son also has diastrophic dysplasia,” shares Allison. “They recommended we consult with the skeletal dysplasia team at Nemours Children’s. While Jackson was still in the NICU with feeding issues, we were in contact with Angie Duker, MS, CGC.” In May of 2016, when Jackson was just 3 months old, they made their first visit to Nemours Children’s Hospital, Delaware. “As diastrophic dysplasia is not as common as other types of skeletal dysplasia, we were looking to find care from medical professionals with specific and successful experience with the […]

ALL BLOGS

Overcoming Obstacles: Anel’s Story

At 17, elite soccer player, Anel, faced a daunting diagnosis of a torn acetabular labrum and femoroacetabular impingement (FAI), threatening his athletic dreams. For Anel, the first signs of trouble appeared during a significant growth spurt. “I initially had pain back in 2022 when I had a growth spurt and never thought anything of it,” Anel shares. Though he dismissed it, the pain persisted, and after months of intermittent issues, his athletic trainer at Jacksonville FC recommended he seek further medical attention. It was then that Anel was referred to Nemours Children’s Health, Jacksonville. When Anel started receiving treatment from Sports Medicine Director, Dr. Stephanie Pearce and Caitlin Schlosser, MHA, ATC, OTC, they quickly realized the severity of his condition. “They immediately found out the problem with an MRI scan, and we proceeded with a treatment plan,” Anel explains. The first approach was to try a less invasive method, a […]

PATIENT STORIES

Dwarfism Awareness Month: Emma’s Story

Megan and Brian were overjoyed when they learned of their pregnancy with Emma. Like many expectant parents, they were filled with excitement and anticipation. However, their journey took an unexpected turn during a routine 24-week OB/GYN visit. Their doctor noticed that Emma’s growth had dropped significantly to the 3rd percentile, a development that immediately raised alarms. “It was recommended we see Maternal-Fetal Medicine specialists on account of the high-risk pregnancy,” share Megan and Brian. “After several more visits and an amniocentesis, we learned that Emma had achondroplasia, about one month before she arrived.” Achondroplasia is the most common skeletal dysplasia leading to disproportionate short stature. “We are both average height parents and do not have any family history of achondroplasia, so we did not know a great deal about the condition until we met our sweet Emma,” share Megan and Brian. In Emma’s case, her achondroplasia was caused by a […]

Image of newborn who is the 300th birth in the Nemours Children's Health Advanced Delivery Unit in Delaware.

MATERNAL-FETAL MEDICINE

300 Births and Counting: Inside the Nemours Advanced Delivery Unit

The advanced delivery unit (ADU) at Nemours Children’s Hospital, Delaware recently reached a major milestone — welcoming 300 babies into this world! Expectant parents can take comfort in the comprehensive multidisciplinary care model of the Nemours Advanced Delivery Program, which is designed for babies diagnosed with medical conditions before birth that require a post-delivery intensive care unit stay. This planning ensures that newborns’ medical needs are met, allowing access to nationally renowned pediatric specialists and providing families with necessary support and guidance during a critical time. The story of baby Ricky’s family illustrates the program’s benefits, as they chose to plan his arrival at the Nemours Children’s ADU after he was diagnosed with a congenital heart defect (CHD) before birth. When a Family Learns Their Baby Needs Extra Care Most commonly, families learn their unborn baby will need specialized care during a routine prenatal ultrasound. Ultrasounds during pregnancy are often […]

Pediatric cancer patient bonding with family in nature showcasing the importance of emotional support during care.

RESEARCH

Emotional Support Matters for Families Facing a Pediatric Cancer Diagnosis

Nemours Children’s Health cancer research shows parents and providers may disagree on how to prioritize support The Emotional Side of Childhood Cancer Care When a child is diagnosed with cancer, parents and care teams share the same goal: making sure the child gets the best care possible. But pediatric cancer care goes beyond treatment. Children and families facing a cancer diagnosis often need psychosocial resources like mental and emotional support. New cancer research from Nemours Children’s Health shows that while both parents and healthcare providers agree that these resources are important, they don’t always agree on which ones should come first. Inside the Research: Exploring Priorities in Family Support In 2015, experts and cancer advocates, including Nemours Children’s researchers, published the first Standards for the Psychosocial Care of Children with Cancer and their Families. These guidelines define best practices for this area of pediatric oncology care and how to best […]

Young pregnant woman lying on sofa at home, looking at the ultrasound scan photo of her baby.

PREGNANCY

Planning for a Baby: How to Prepare for a Healthy Pregnancy

The decision to become pregnant is a significant life choice. By working with healthcare experts in advance, you can increase your chances of a successful pregnancy and a positive outcome. If you’re planning to conceive, consider scheduling a preconception consultation with your healthcare provider several months to a year before attempting to get pregnant. This allows time to implement any necessary lifestyle adjustments or prenatal testing they recommend. If you have concerns or anticipate a high-risk pregnancy, talk to your doctor to see if they recommend consulting a maternal-fetal medicine (MFM) specialist for any extra guidance and care. What is Preconception Care? Preconception care is taking proactive steps to optimize your health before getting pregnant, which evidence suggests can significantly impact the possibility of a healthy pregnancy. In fact, as the clinical evidence continues to support this idea, the International Federation of Gynecology and Obstetrics has developed an online preconception […]

ALL BLOGS

Navigating Complex Urologic Care: A Family’s Journey

Abigail and Vivian’s path to Nemours Children’s was paved by challenges, each step bringing them closer to the answers they needed. Abigail, now 15 years old, was born with a neurogenic bladder, a condition where the bladder does not function properly due to nerve damage or dysfunction. This issue became apparent when the family started potty training her. For Abigail, this meant frequent accidents, infections, and discomfort, which were distressing for her and her family. Though it seemed like a common and simple problem in a young child, her mother, Brittany, recalls, “I just felt like there was something more here. So, everyone agreed, ‘You need to go to the best children’s hospital.’” Despite initial hesitation, she knew she had to seek expert care for her daughter. “For us, driving to Nemours is about an hour and a half each way. At first, I was hesitant because of the distance, […]

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