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Nemours Children’s Health, Delaware Valley

Donate Life Month: Everlee’s Story

Everlee’s story begins with a diagnosis of hepatoblastoma, a rare form of liver cancer, at the age of 17 months. Her mother, Jenna, recalls the moment when she first noticed something amiss with her daughter’s health. “It was right around Christmas of 2022,” says Jenna. As first-time parents, Jenna and Jarod couldn’t shake the feeling that Everlee’s belly seemed larger than normal. Despite reassurances from pediatricians, inklings of concern persisted, especially when family members echoed their observations. “Something just seemed off,” says Jenna. “I was giving her a bath one day, and I laid her out on the towel and thought, ‘Oh my gosh, she just looks so bloated.’” Alarmed, Jenna wasted no time in seeking medical attention. She was able to get Everlee in to see her local pediatrician at their last appointment for the day on Friday, January 13th. The routine examination led to the discovery of a […]

Cerebral Palsy Awareness Month: Eloise’s Story

Eloise, a dynamic and determined young girl, received a diagnosis of cerebral palsy just before her second birthday.  After Eloise celebrated her first birthday, her parents assumed she would start walking soon, but as each month passed by, despite their initial hopes and patience, Eloise had still not taken her first steps.  Her parents recall the pivotal moment when, at 18 months, Eloise was referred by her primary care physician for evaluations and specialized care. Their journey led them to Nemours Children’s Hospital, Delaware where Eloise underwent a series of comprehensive evaluations, including MRI, EKG, and X-rays. While the test results appeared normal, Eloise was diagnosed with spastic diplegic cerebral palsy due to her muscle spasticity and gait difficulties.  Eloise’s family learned to their surprise that in a majority of cases, the specific cause of cerebral palsy is unknown.  Eloise took her first steps shortly before her 2nd birthday, albeit […]

Cerebral Palsy Awareness Month: Annika’s Story

Annika’s path to a cerebral palsy diagnosis began at a young age. Born prematurely at 29 weeks and five days, Annika’s mother, Jessica, noticed subtle differences in her development around six months. When Annika’s twin began reaching certain milestones, such as rolling over, ahead of her, Annika’s family became concerned. “That was my first clue that something was not exactly typical,” says Jessica. “I mentioned it to her local pediatrician; however, Annika did a lot of other things typical and well, so she didn’t seem worried. I just knew deep down that something was off, and asked if, based on her prematurity, she could qualify for early childhood physical therapy. Annika began her first physical therapy when she was 7 months old.” Jessica’s persistence led Annika to early intervention therapies, and when Annika was 11 months old, she asked that the pediatrician refer her to a local pediatric neurologist. Despite […]

Rare Disease Day: Madison’s Story

Madison’s dysplasia journey began even before she came into the world. During pregnancy, concerns arose as she was smaller than expected. However it was only after her birth, when she was diagnosed with hip dysplasia, that the first signs of something more complex emerged. X-rays at four months old revealed trident acetabulum and an s-shaped scoliosis, so a skeletal dysplasia genetic testing panel followed, identifying changes in B3GALT6. Variants in this gene are associated with a rare skeletal dysplasia known as spondyloepimetaphyseal dysplasia joint laxity type 1 (SEMDJL1). This condition can cause issues like progressive scoliosis, joint laxity/dislocations, and more. When they found out about her diagnosis, Madi’s family faced uncertainties about what her future might look like. However, Madi’s fiery spirit has shone through. She charms everyone she meets with her sassy personality and infectious joy. Madison’s mom, Anna, emphasizes that her daughter has never allowed anything to hinder […]

Beyond a Heart Transplant: Valerie’s Cardiomyopathy Story

When Valerie was 5 years old, Brant and I noticed her energy and endurance greatly decreasing. She was unable to run for more than a minute or even go on a quarter mile walk without needing breaks and getting winded. Her endurance seemed to take a sharp turn for the worse in the summer later that year. She developed abdominal bloating. Her ability to play outside with her brothers or neighborhood friends was becoming increasingly difficult. She also would become overheated easily; she couldn’t be outside in the summer heat for long at all before needing to go back inside to the AC. Her appetite also started to dwindle. All her symptoms reached a level of concern to the point where we needed to investigate a solution with the help of medical professionals. After lab work with the pediatrician to rule out things like diabetes, celiac, and Crohn’s, they performed […]

Ashley’s Microtia Journey

Follow the inspiring journey of 10-year-old Ashley Garcia, who triumphs over microtia with personalized care at Nemours Children’s Hospital, Delaware.

Innovation in Pediatric Care: Meghan’s Story

Meghan’s journey with Bladder Neck Dysfunction unfolded over the course of several years, involving many visits to urologists. It was only when she sought the expertise of Dr. Hagerty, making the journey all the way from Rhode Island to Nemours Children’s Hospital, Delaware, that a diagnosis was finally made. Before treatment at Nemours Children’s, bladder issues had caused many complications throughout Meghan’s life. Pain, discomfort, urinary retention, and bladder spasms were constant obstacles, making it difficult for her to attend school and participate in social activities. Her condition had become a barrier to living her teenage life. However, Nemours proved to be a place of hope for Meghan and her family. The kindness and compassion given by every staff member, from the front desk to the medical professionals, left a lasting impression. So much so that Meghan even suggested relocating to Delaware upon leaving the hospital – a testament to […]

Beyond Expectations: Brody’s Diastrophic Dysplasia

At Marcella’s 20-week ultrasound, she learned that her unborn child, Brody, had skeletal dysplasia. This news caused a whirlwind of emotions, but little did she know that this journey would lead her to the incredible team at Nemours Children’s Hospital, Delaware, setting them on a path of resilience and discovery. With this news, Marcella dove into gathering information to understand the unique challenges that Brody might face. Although they lived in Wichita, KS, her research led her to the Nemours Children’s Orthopedics team. Brody’s first appointment at Nemours didn’t come until six months, although Marcella was in touch with the skeletal dysplasia team shortly after he was born. She connected with Colleen Ditro, DNP, CPNP who would become an integral part of Brody’s journey. As Brody came into the world, so did a definitive diagnosis of diastrophic dysplasia, a rare genetic condition that causes dwarfism. Their local NICU was ill-equipped to […]

A World of Difference: Sawyer’s Story

In 2023, Stephanie, a mom and homeschool teacher from Virginia, found herself expecting her fourth child. Little did she know, this journey would lead her family to Nemours Children’s Health, bringing them expert care for her newborn son, Sawyer, who was diagnosed with osteogenesis imperfecta (OI) a condition that affects bone strength. In someone with OI, bones may break (fracture) easily, resulting from minor trauma or no clear cause. Before Sawyer’s arrival, Chris and Stephanie’s life felt complete with their three children: Cassie, Evan, and Eli. While unexpected, the news of a new addition to the family was quickly met with surprise and excitement. The entire family eagerly prepared for their newest member’s arrival. On a whim, Stephanie decided to take advantage of an extra ultrasound through a free service that was offered at her Pregnancy Resource Center. She wanted her other children to be involved and thought this was […]

Warning Signs: Gianna’s Leukemia

Join Gianna’s inspiring journey from a mysterious illness to a leukemia diagnosis, her tailored treatment at Nemours Children’s Hospital, Delaware.

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Page 7 of 10

Page 7 of 10