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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.

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 […]

A Dream Recovery: Avyn’s Story

At just four years old, Avyn was diagnosed with a severe 60º curvature of Early Onset Scoliosis. Her local physicians recommended Mehta casting, prompting her family to begin searching for the best pediatric orthopedic specialists in the nation. Their search led them to Dr. Joseph Khoury in Florida and Dr. Alec Stall in Texas. The decision to choose between these two esteemed doctors wasn’t easy, but ultimately, Avyn’s family placed their trust in Dr. Khoury at Nemours Children’s Hospital, Florida. “Avyn has been extremely resilient throughout her scoliosis journey,” says her mother, Sarah. Thanks to her treatments, Avyn’s curve progression slowed, allowing her to maintain her normal life, participating in athletics and daily activities with minimal discomfort. However, as she grew older, her family knew she would need a spinal fusion surgery at age 10. “We discovered Nemours when Dr. Khoury transferred from Shriners Tampa to Nemours Children’s,” says Sarah. […]

Dillan’s Hearing Loss Journey

Dillan’s hearing loss was discovered during a routine hearing scan, revealing that she was deaf in her left ear. While Dillan’s family had noticed some challenges with communicating before seeking treatment at Nemours Children’s Hospital, Florida, they were shocked to learn this news. Her family was very eager to find answers and solutions. Having been involved with the groundbreaking of Nemours Children’s Hospital, Florida 10 years ago, Dillan’s family was drawn to the comprehensive care provided under one roof. “Nemours provided seamless care. I love being able to communicate with her doctors in real time,” says Dillan’s mom. With the help of Dr. Morgan Wilcox, Dillan now has a hearing aid for her left ear, making an incredible difference in her hearing. “From the first day I met her, Dillan is always smiling and just has this contagious, feel-good attitude that you can’t help but smile and laugh along with […]

Mila’s Cleft Journey

During Liane Rensing’s 20-week ultrasound, it was discovered that her baby, Mila, had a cleft lip. This diagnosis expanded when Mila was born with a right-sided incomplete unilateral cleft lip and a complete cleft palate. The first year of her life brought challenges to the Rensing family as they learned to navigate caring for Mila. “We learned how to feed and take care of her with feeding devices like special nipples and bottles,” explains Liane. “We had to figure out how to tape specifically designed appliances to Mila’s nose and forehead to prepare her for her cleft surgeries. Miami felt like our second home since we traveled there for Mila’s numerous surgeries and appointments.” In their pursuit of finding the best care for Mila as she grew older, the Rensing family discovered Nemours Children’s Health. Their first experience with Nemours Children’s was with an audiology test and sleep consultations with […]

Jessica’s Journey: Overcoming Lymphoma (Father’s Words)

On December 24, 2022, our world was shattered when we received the heart-wrenching news that our beloved daughter had been diagnosed with stage 2 lymphoma. The holiday season, meant to be joyous, was clouded with the weight of this devastating revelation. Unable to bring ourselves to share the news on Christmas Eve, it was only two days later, post-Christmas, that we found the courage to inform her about the upcoming scans, setting the stage for a challenging but triumphant journey. The initial discussion with her oncologist became the turning point, revealing both the harsh reality of her condition and the hopeful news that it was treatable. Her strength emerged as a beacon of resilience when confronted with this news. She held back tears and faced the daunting question of how much time she might have left in this world. Jessica shares, “I was disappointed and sad by the news. I was […]

A Hole in the Heart: Natalie’s CHD Journey

My mom has loved me from the very moment she knew I was in her belly. One day, during a routine ultrasound, her fetal care team found a single-vessel umbilical cord. This was concerning since my right kidney was found to be missing during previous anatomy scans. My mom remembers the sonographer looking concerned, telling her that she’d be right back. The next thing she knew, three physicians including her OB/GYN were in the room looking at the monitor with concerned looks of their own. It was at that time that her doctor shared, “the baby has a hole in her heart.” My mom was quickly referred to a pediatric cardiologist for a fetal echocardiogram and a confirmed diagnosis. Throughout my childhood, I went from doctor to doctor, specialist to specialist, until my family and I fell in love with Nemours Children’s Health, Pensacola. The staff at Nemours have been […]

What a Difference: Brandiel’s Story

Nemours Children’s Health came into Brandiel’s life when he was having difficulty hearing. Recommended by his school, the hospital has played a pivotal role in their journey. Yaleitza, his mother, remembers the initial challenges they faced with Brandiel growing up. “It was hard,” she says, “He couldn’t hear. We would have to repeat ourselves multiple times. It was just so hard for him.” “I remember when I first found out about his hearing loss diagnosis, it was very difficult for us,” says Yaleitza. Brandiel was diagnosed as deaf in one of his ears. “But Dr. Pritchett made me feel so comfortable with everything.” After some time working with Dr. Pritchett and the team at Nemours Children’s Hospital, Florida, Brandiel was approved for a cochlear implant. Yaleitza, though a bit nervous at first, was excited for this opportunity. Brandiel underwent a cochlear implant procedure when he was 9 years old. Yaleitza […]

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Page 5 of 7

Page 5 of 7