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Cleft and Craniofacial Awareness Month: Brody’s Story

Brody’s journey began before he was born. During a routine anatomy scan, Beth and her husband learned that one of their twins, Brody, would be born with a cleft lip and possibly a cleft palate. “I was pregnant with twins through IVF and was sent to Nemours Fetal Care,” shares Beth. “After finding out about Brody’s diagnosis, we did a lot of research and compared to teams in Tampa. After a facetime with Dr. Kellogg to ask him questions, we knew we found Brody’s doctor and team.” Upon Brody’s birth, he encountered difficulties due to his cleft lip and palate. “Prior to surgical intervention, Brody struggled with feedings; milk would come out his nose, he drooled a lot, and I don’t think he was able to hear well,” Beth shared. These challenges emphasized the need for specialized care, which they found at Nemours Children’s Hospital, Florida. Despite living over two […]

The Comeback: Maddy’s Story

For elite gymnast Maddy, the journey to greatness wasn’t without its hurdles. But with determination and the expert care at Nemours Children’s Health, Maddy is back on her feet, ready to conquer the mat once again. Maddy’s athletic career took an unexpected turn on January 25, 2023, during a routine practice session at Temple University. A gymnast on the collegiate team, she faced a setback that would challenge her both physically and mentally—a ruptured Achilles tendon. Before receiving treatment at Nemours Children’s, Maddy experienced the full weight of her injury. “I was unable to walk, move my foot in any direction, and do everyday activities like go to class,” she recalls. “I was also in an abundance of pain every day that led to many mental breakdowns.” Having received treatment from Nemours Children’s Health, Jacksonville for years growing up, she knew she would get exceptional care for her new injury. […]

18 Years Cancer-Free: Andrew’s Story

When Andrew, now 28, reflects on his journey with Nemours Children’s Health, he describes it as nothing short of miraculous. Diagnosed with hepatoblastoma that had metastasized to his lungs and brain as a child, Andrew’s journey to recovery has been thanks to his expert medical care and unwavering support system. In November 1999, 3-year-old Andrew woke up in the middle of the night complaining of shoulder and abdomen pain. His parents, concerned, took him to the pediatrician in Augusta, Georgia, where appendicitis was initially suspected, and surgery scheduled. However, a perceptive surgeon, recalling a rare medical condition from his studies, insisted on further tests. The results were alarming: Andrew’s cancer markers were sky-high, pointing to a serious diagnosis. The local medical team quickly realized they needed specialized help, so he was transferred to a children’s hospital. The surgeons there reached out to Dr. Adela Casas-Melley, who was working at Nemours […]

Pursuing a Passion for Child Life ­­– Associate Spotlight: Kathryn Sparger

Kathryn Sparger’s journey to becoming a Certified Child Life Specialist was inspired by her sister, who witnessed the incredible impact child life specialists have on patients and their families during her time in nursing school. This insight sparked Kathryn’s interest and set her on a path that she quickly fell in love with. “Child life is such a special career path,” Kathryn shares. “I’m so grateful to our kids and families who have invited me into their lives to care for them.” Kathryn always knew that Nemours Children’s Health was the place she wanted to be a part of. The supportive and mission-driven environment at our hospital in Orlando has allowed her to thrive and provide the best care possible for her patients. Working with the Hematology and Oncology team has been one of the highlights of Kathryn’s career. “I absolutely love my hem/onc team. They are true heroes. They […]

Enjoying Each Moment: Alek’s Story

Alek is a courageous patient whose journey with severe kyphoscoliosis led him across the globe to Nemours Children’s Hospital, Delaware. Kyphoscoliosis is a dangerous condition that affects the spine. It causes an abnormal curve in two directions, side to side and front to back. It is a combination of two other conditions: kyphosis, which causes a severely rounded appearance of the back, and scoliosis, where the vertebrae form a curvature instead of being straight. Alek’s diagnosis unfolded in Poland in 2010 when he was a young boy. The road ahead seemed daunting as his condition gradually worsened. “Before starting treatment at Nemours Children’s, Aleksander’s condition was very bad,” shares his family. “He had trouble with breathing and couldn’t eat and walk. He lived in chronic pain.” It wasn’t until after a failed operation in Poland that Alek’s family discovered Nemours Children’s. Referred by their physician in Poland, Alek and his […]

A Journey With Craniosynostosis: Georgia’s Story

At 11 months old, Georgia has already shown incredible resilience and strength throughout her life. Diagnosed with isolated nonsyndromic unilateral craniosynostosis at 8 weeks of age, Georgia’s journey has been a whirlwind of medical appointments, treatments, and hopeful recovery. Karin and Edwin knew early on that something was different about their daughter, Georgia’s, head shape. They voiced their concerns during her 1-month and 2-month check-ups. At her 2-month appointment, the nurse practitioner conducted a thorough examination. It was then that they noticed an absence of the soft spot on the top of Georgia’s head. This was a critical moment for her family. Craniosynostosis is a condition where one or more seams between the bones in a child’s skull close too soon. This premature closure prevents the skull from growing properly and results in an abnormal head shape. If left untreated, craniosynostosis can increase intracranial pressure, leading to developmental problems, headaches, […]

On The Right Path: Marina’s Story

When Marina was just 6 months old, her family noticed something unusual—her neck often fell to one side. This seemingly minor issue led to a series of medical consultations and diagnoses that would shape the future for Marina and her family. Diagnosed with torticollis and abnormally low muscle tone (hypotonia) by her pediatrician, Marina was referred to a neurologist at Nemours Children’s Hospital, Florida for further evaluation. Upon consulting with Nemours Children’s specialists, it was discovered that she was experiencing frequent seizures. “Various specialists conducted studies, leading to the discovery of congenital cytomegalovirus on February 2, 2022, just after her first birthday,” shares her mother, Kenialys. “This news left us shocked, confused, sad, anxious, and scared. However, the dedicated care from healthcare professionals at Nemours helped us regain optimism and hope for Marina’s future.” Cytomegalovirus (CMV) is closely related to the viruses responsible for chickenpox and mononucleosis (mono). Babies infected […]

Navigating Crohn’s Disease: Billy’s Story

Jessica, 12-year-old Billy’s mother, recalls the summer of 2022 when they noticed something unusual during their family getaway. “While on vacation, we discovered he had an anal fistula,” she recounts. In April of the following year, Billy experienced his first flare-up, ultimately leading to a diagnosis of Crohn’s disease. Located in their hometown, Nemours Children’s Hospital, Florida became a regular visit for Jessica and Billy. “We have lived in Lake Nona for over 11 years,” says Jessica, so they were already familiar with the Nemours Children’s location. From the moment they stepped through the doors, they were greeted by a team of dedicated professionals led by gastroenterologist Dr. Pablo Palomo. Reflecting on their experiences with the Nemours team, Jessica highlights the genuine care and compassion in each interaction. “Billy’s liked everyone he’s ever interacted with,” says Jessica. “My favorite thing about them is how special they make me feel, even […]

From Diagnosis to Triumph: Ny’Jour’s Journey

From diagnosis to triumph, Ny’Jour’s complex medical journey involving heterotaxy and heart complexities received compassionate care from Nemours Cardiac and Maternal-Fetal Medicine teams.

AMC Awareness Day: Sara & Ewa

On this Arthrogryposis Multiplex Congenita (AMC) Awareness Day, we shine a spotlight on two remarkable women, Ewa and Sara, whose journeys with AMC have inspired countless individuals. Ewa’s journey with Nemours Children’s Health began in 1986 when she traveled from Poland to receive treatment for AMC, a rare condition affecting 1 in 3,000 births. Nemours became her second home, offering life-saving care and support from a dedicated team of doctors and therapists. “Nemours, along with my family, truly shaped me into the person I am today,” Ewa shares. Her gratitude for the care she received has fueled her commitment to give back through various fundraising initiatives, including Nemours Radiothon, Brace for the Race, and an annual toy drive. In her latest endeavor, Ewa organized a book fundraiser for another Arthrogryposis patient and author, Sara Gaver. For every book donated, Ewa matched the donation, resulting in a collection of 110 copies […]

Scoliosis Awareness Month: Esther’s Story

Esther’s journey with scoliosis began during a routine check-up in the summer of 2020. Her primary care physician discovered the curvature of her spine during a yearly visit, just as Esther was experiencing a growth spurt. Her provider quickly referred Esther to a specialist at Nemours Children’s Health, Jacksonville, where an X-ray confirmed the diagnosis. “I went to get X-rays and found out my spine was crooked,” Esther shares. “It was unexpected, but I’m grateful we caught it when we did.” Under the care of orthopedic surgeon Dr. Kevin Neal, Esther embarked on an 18 month journey, closely monitoring the progression of her curve, and exploring treatment options. In the beginning, Esther didn’t experience much pain. However, as the curvature of her spine progressed, approaching 60 degrees, the impact on her daily life became increasingly challenging. “Pain didn’t come until the curve progressed horribly over two years or so, and […]

Scoliosis Awareness Month: Kalani’s Story

Under the expert care of our dedicated team in Nemours Children’s Hospital, Florida, Kalani embarked on a path of treatment for juvenile idiopathic scoliosis and neurofibromatosis type 1 (NF1) at 6 years old. Her journey began in July 2023 when her mother, Monica, noticed a slight curvature in Kalani’s back. Concerned, they sought answers from orthopedic surgeon Dr. John Lovejoy at Nemours Children’s. “An X-ray confirmed that her back had a curvature and an MRI was ordered out of caution to make sure there was not an underlying issue causing the curve,” shares Monica. “The MRI showed she had lesions/tumors believed to be caused by NF1. Following the MRI results, Dr. Lovejoy referred Kalani to oncology and genetics to confirm the diagnosis and begin treatment. When we had a follow-up with Dr. Lovejoy at the end of October 2023, an X-ray showed the curve in Kalani’s spine had gotten worse […]

Page 4 of 18

Page 4 of 18

Page 4 of 18