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Madison’s journey with Hemophagocytic Lymphohistiocytosis (HLH) began at 2 months old. A severe ear infection spiraled into Mastoiditis, leading to urgent surgery and a slew of testing. It was a challenging time for her mother, Jeannine, and their family. They grappled with the possibility of HLH, a blood and immune system disorder that had already touched their lives through Madison’s brother. Jeannine recounts, “Madison’s condition was weighing heavy on our minds that she could have HLH like her brother did.” Having sought care for her son at Nemours Children’s Hospital, Delaware, Jeannine turned to the hospital once again, entrusting them with Madison’s care. “We have always felt the doctors and therapists have cared for and loved us truly from their heart,” says Jeannine. “We went to larger hospitals and felt like we were a number there, but not at Nemours.” Madison’s treatment at Nemours Children’s primarily involves outpatient therapy services. […]

For Carly, the journey to a Morquio Type A diagnosis began with uncertainty. As a young child, there were signs that something wasn’t quite right, and her parents embarked on a quest for answers. After a lot of testing and a few misdiagnoses, it wasn’t until Carly was around a year and a half old that a local doctor stumbled upon a small paragraph in a textbook about Morquio Type A, setting the stage for a lifelong medical journey. When her physician, Dr. Kopis from St. Jose Hospital, could no longer practice, Carly’s journey led her to the care of Dr. William Mackenzie at Nemours Children’s Hospital, Delaware. With expertise in skeletal dysplasia, Nemours Children’s was the perfect fit for Carly, offering specialized care tailored to her needs. “From the beginning, my parents loved the care I received at Nemours,” says Carly. “My mom immediately transitioned all of my doctors to […]

Laura, Jess, Ginny, and Jasmine are remarkable mothers whose paths crossed through their children’s diagnoses. Through shared experiences and care teams, this group of women have formed lasting friendships. Their children, Charlette, Noah, Gino, and Jeremiah, share the diagnosis of osteogenesis imperfecta (OI) and receive compassionate care from the exceptional team at Nemours Children’s Hospital, Delaware. Under the guidance of dedicated clinicians such as Dr. Ricki Carroll, Dr. Jeanne Franzone, Tina McGreal, APRN, Licensed Genetic Counselor Andrea Schelhaas, Sarah Little, PA-C, Katie Harp, LCSW, and many more, these children are thriving in a nurturing environment full of hope. United by a common journey, Laura, Jess, Ginny, and Jasmine were introduced to each other via an online group for parents of children with OI. Through these Facebook groups dedicated to OI, they discovered a community where fears were conquered, victories celebrated, and wisdom exchanged. Laura recalls the moment when she first […]

During Nurses Week, explore Liz Upadhyaya’s journey from marketing to pediatric nursing at Nemours Children’s Hospital in Delaware.

Celebrate Nurses Week with Ashley Johnson’s inspiring journey as Tracheostomy Nurse Manager at Nemours Children’s Hospital in Orlando.

In the world of healthcare, finding a place that feels like home can be a challenge. For Amanda, mother of 4-year-old Mackenzie, that home is Nemours Children’s Hospital, Delaware. Mackenzie’s journey with osteogenesis imperfecta (OI) began even before she took her first breath. At just 25 weeks, Amanda learned of her daughter’s diagnosis. “I went for a routine anatomy scan while pregnant. Significant bowing in Mackenzie’s legs and long limb measurements indicated that she would need more testing. I received an amnio and was sent to another hospital where she was diagnosed,” Amanda recalls. Transitioning Mackenzie’s care to Nemours Children’s was a pivotal moment for their family. They discovered the facility after finding recommendations on social media. “We are part of a group on Facebook for parents of children with OI,” says Amanda. “I was asking questions when Mackenzie broke her arm at 10 days old and someone recommended we […]