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Dani has spent the past five years navigating life with Poland Syndrome. Diagnosed at 14, Dani’s journey took her from feeling insecure about her body to embracing newfound confidence, all with the help of the compassionate team at Nemours Children’s Hospital, Delaware. Poland Syndrome is a condition characterized by the underdevelopment or absence of chest muscles. For Dani, it began to significantly affect her during puberty. “It really started to affect me when I realized that my left breast was not growing as my other one was,” shares Dani. This physical difference impacted her self-esteem, especially during the summer when finding a bathing suit seemed impossible. “It made me very insecure, and it was hard to find confidence within myself,” she shares. Simple activities like shopping for summer shirts or feeling comfortable at the beach became daunting challenges. Dani’s connection to Nemours Children’s began with her sister, who had been […]

Meaghan remembers the early days of her daughter Addison’s life vividly. Diagnosed with a cleft palate just days after birth, Addison’s journey began with a challenge. “She was having a very difficult time breastfeeding and just didn’t seem interested in eating,” recalls Meaghan. Suspecting a possible lip tie, she asked a nurse to check Addison’s mouth. Instead, the nurse discovered a cleft palate. From that moment, Meaghan began the process of feeding Addison using a bottle with a valve. The cleft palate diagnosis impacted the Addison’s family’s daily routine significantly. With a 3-year-old son already keeping them busy, adjusting to Addison’s needs meant slowing down their usually fast-paced days. “In the very beginning, it would take about 45 minutes to an hour for one feeding,” says Meaghan. “With Addison struggling to eat, we had to take each day at a time.” However, with perseverance and patience, Addison began to improve […]

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 […]

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. […]

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 […]

Jason’s story began with a seemingly innocent complaint, ear pain. Concerned for her son, Andrea Salicia vividly remembers the moment she first suspected something was wrong with her son Jason. While feeding him, she noticed that he was twitching, and it didn’t appear to be normal newborn behavior. A few days later, in a terrifying incident, Jason began gasping for air during a feeding, followed by a more severe twitch. Panicked, Salicia rushed him to the Nemours Children’s Hospital, Florida emergency room. It was there that a nurse informed her that Jason’s “twitches” were actually seizures, prompting further investigation. This nurse also thought that he might have a condition called DiGeorge syndrome but didn’t want to say anything until it was confirmed. The medical team then performed a spinal tap and various tests, which led to a diagnosis of 22q11.2 deletion syndrome, also known as 22q or DiGeorge syndrome, at […]