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Patient Stories

Madelynn was 7 days old when the pediatrician called her mom, Rebekah, around 6pm in the evening (never a good sign). Rebekah knew right away that something was amiss. The pediatrician mentioned cystic fibrosis and said they should do some testing on baby Madelynn. She was 14 days old when she went for her first sweat test. Rebekah was petrified holding her newborn while electromagnetic currents were taped on Madelynn’s arm. Then, they had to sit in a hot room, hoping for Madelynn to produce enough sweat to test for sodium chloride levels. The waiting was awful. Early the next morning, they received a call from the pediatrician, stating they had a 3pm appointment with the pulmonologist. This is when Madelynn’s journey with CF began. When Madelynn was 7 years old, her family found out that one of her original CF doctors was retiring. Additionally, her family had recently moved to […]

At the young age of 15, Kalianne never expected to receive the challenging diagnosis of multiple sclerosis. Overnight, her world changed. When Kalianne woke up sweating with chills and couldn’t feel the right side of her face or body, her dad immediately took her to the local ER. Kalianne was so nervous to be heading to the hospital, she got sick in the car on the way there. Once they arrived, Kalianne was whisked away for blood tests and a CT scan. After looking at her test results, the ER staff concluded that Kalianne was having severe headaches, which was causing the vomiting and other symptoms and then they sent her home. A few days had gone by, and Kalianne’s symptoms continued to worsen. She was experiencing numbness in her face and tongue, her limbs felt heavy, and she was losing the ability to write clearly. After researching her symptoms […]

From using a walker to taking unassisted steps, Mari has come a long way on her journey with cerebral palsy, proving that having a condition does not define who she is or what she can accomplish.

Shortly after his arrival into the world, Aiden was whisked away to the NICU. He was born with an array of complex health concerns, which led doctors to diagnose Aiden with 22q deletion syndrome (AKA DiGeorge syndrome or velocardiofacial syndrome). 22q deletion syndrome results from a small, missing part of chromosome 22. This deletion affects several body systems during development and can cause heart problems, kidney problems, a weak immune system, low calcium levels, hormone imbalances and speech problems, among other issues. Like up to 90% of children born with 22q deletion syndrome, Aiden struggled with nasal sounding speech. Because of this, it was hard for his parents to communicate with him and understand him, leading to frustration. After meeting with Dr. Kellogg and the rest of the 22q Team at Nemours, Aiden’s parents decided to pursue surgery to improve Aiden’s speech. When Aiden and his family arrived for his […]

In 2022, after his parents began to notice a stutter in his speech, Finnegan went to Nemours Orlando Outpatient Therapy Services to seek help. It was then that his speech therapist discovered that Finnegan had a disfluency. They recommended he work with Michelle Bartlett, SLP as that is her area of expertise. “Michelle has consistently approached every session with passion and care.  She truly wants Finnegan to succeed,” says Lauren. During his first episode of care with Michelle, Finnegan struggled to make progress. However, once Finnegan started his second episode of care, “It seemed like a light bulb sort of went off for him,” says Lauren. “All of a sudden, he really started to use the tools that he and Michelle would practice.” “They made his sessions so fun for him,” says Lauren. “Whatever he was interested in that week, whether it was Cars or PJ Masks or Lion King, […]

Two days after his birth, Gray started having gastrointestinal complications. It was found that his lower intestine was in a knot and his meconium was so compacted, the surgeons’ tool couldn’t clear it out. Gray was immediately admitted to the NICU and taken in for emergency surgery, before his mother was even discharged from the hospital. Six days after he was born, “We ended up getting a call from Nemours Pulmonology confirming Gray’s diagnoses of Cystic Fibrosis. They told us that he has ‘double delta f508’ and that he has one of the most common genetic mutations for CF,” says Gray’s mother, Lauren. “The phone call was brief, and everything was a blur. We were told that his mutation qualified for really good treatments and that he would have a good prognosis!” “Gray was born with a common condition in children with cystic fibrosis called meconium ileus in which a […]