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Nemours Children’s Hospital

Navigating HLH with Hope: Madison’s Story

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. […]

Living Life to the Fullest: Carly’s Journey with Morquio Type A

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 […]

The Power of Community at Nemours Children’s Health

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 […]

Osteogenesis Imperfecta Awareness Week: Mackenzie’s Story

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 […]

From Patient to Pre-Med: Maddie’s Story

At 13 years old, Maddie Walsh was diagnosed with melanoma. This unexpected turn led her to Nemours Children’s Hospital, Florida, where she found a supportive community that became like family. Maddie’s journey began with the discovery of a change in a mole she had since childhood. A dermatologist family member recognized the signs and urged her to seek medical attention. Following a biopsy and consultations with various pathologists, Maddie received the diagnosis of malignant melanoma from Chief of the Division of Plastic and Craniofacial Surgery, Dr. Brian Kellogg. “I was 13 when I first heard I was going to see a plastic surgeon. I was very confused because I only knew them by the stereotypes on TV,” says Maddie. “However, I quickly learned that was far from what Dr. Kellogg and his team does. When I first heard the word ‘cancer,’ my mind jumped to the worst. I was terrified. […]

Donate Life Month: Jamaica Pediatric Living Related Donor Liver Transplant Program

Growing up in rural Jamaica, Dr. Judith A. Jones was inspired by the idea of helping others. In a community where the only female healthcare professionals she saw were nurses, her older brother’s encouragement sparked the realization that she, too, could become a doctor. “It reinforces for me to this day how a casual comment can change the trajectory of a child’s life, making things possible that were not previously dreamt of,” says Dr. Jones. “My big brother told me I could be a doctor, and so I did, because it was the way in which I believed I could help people. As a young girl, I had an overwhelming sense that I should help people when I grew up. My parents were incredibly hard-working and were professionals despite coming from humble beginnings. Their example and encouragement also led me to pursue medicine as my life’s work.” Her career led […]

Limb Loss & Limb Differences Awareness Month: Jaiden’s Story

Jaiden’s medical journey began with a diagnosis of Fibular Hemimelia during a routine anatomy scan at just 20 weeks into his mother, Megan’s, pregnancy. Little did they know, this diagnosis would lead them to Nemours Children’s Hospital, Delaware. Upon learning about her son’s condition, Megan was very shocked. “It was unexpected, but we knew we had to do everything we could to give Jaiden the best chance at a fulfilling life,” she shares. “Though Jaiden always got around fine, if he didn’t have surgery, his legs would be drastically uneven and would not be able to walk.” Their journey with Nemours Children’s began in 2012 when Megan sought a second opinion on Jaiden’s condition. “A family friend suggested Nemours, and from the moment we walked through the doors, we knew we were in good hands,” Megan reflects. Dr. L. Reid Nichols, a renowned pediatric orthopedic surgeon, became an integral part […]

Donate Life Month: Luca’s Story

From the moment he was born, Luca has been full of surprises. He entered the world in February 2022, a month earlier than expected. Anticipating a baby girl, complete with a gender reveal celebration, Luca’s parents were surprised by his arrival. Their anatomy scan’s mistaken prediction left them pleasantly surprised by their baby boy. Shortly thereafter, concerns arose regarding Luca’s kidney health, along with some unfavorable lab results. Luca was transported to the NICU and later taken to Nemours Children’s Hospital, Delaware. “When the doctors at Inspira Mullica Hill started to get an inkling that Luca had serious kidney issues, they recommended right away that we be transferred to Nemours Children’s,” says his mother, Cory. “We appreciated their honesty so much, as they explained to us that they didn’t have the capability to deal with Luca appropriately. One doctor even said that if this was his child, he would have […]

Limb Loss and Limb Difference Awareness Month: Cara’s Story

When Cara was very young, her family sought out medical help to understand why she kept falling so often. After visits to various specialists, including optometrists, orthopedists, and neurologists, an MRI revealed a spinal cord tumor. Three days later, Cara underwent surgery, leaving her left leg without any feeling or ability to control movement. This led to several years of KFO braces, rehabilitation, emotional processing, and accidental injuries that posed diagnostic challenges due to the lack of sensation in her leg. Cara received a diagnosis of Charcot joint in her knee, after numerous bone infections, surgeries, and prolonged hospital stays. By the time Cara was entering the eighth grade, she decided she wanted her life to have more freedom from her diagnosis. Compiling her thoughts into a comprehensive letter, Cara presented her case for leg amputation to Elizabeth W. Snyder Endowed Chair in Osteogenesis Imperfecta, Dr. Jeanne Franzone, and her […]

Page 8 of 13

Page 8 of 13

Page 8 of 13