Featured Post Archives - Page 6 of 18 - Nemours Blog

ARTICLES RELATED TO:
Featured Post

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 […]

Compassionate Care: Cruz’s Story

“At the 20-week ultrasound, I learned about his skeletal dysplasia,” Brittany recalls. “And at the 33-week Vistara blood test, I learned about his OI diagnosis.” These moments marked the beginning of Cruz’s journey, but they also sparked Brittany’s search for the best care possible for her son. It was during her 35th week of pregnancy that Brittany discovered the Advanced Delivery Program (ADP) at Nemours Children’s Hospital, Delaware, thanks to a recommendation on the Osteogenesis Imperfecta Community Facebook page. “Their care, communication, and knowledge gave us extreme confidence in the ADP Team,” says Brittany. “They had a plan, relayed it to us, listened to our concerns, and had experience delivering OI babies.” The support Brittany received from the medical staff at Nemours Children’s during the delivery process was nothing short of extraordinary. “They showed compassion during every step,” Brittany emphasizes. “They helped keep me calm by talking about my 2-year-old […]

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: 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

Cara’s story started when she was very young, and her family sought medical help to understand why she fell 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 […]

Page 6 of 18

Page 6 of 18

Page 6 of 18