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.
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Patient Stories
A Journey with 22q: Aiden’s Story
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 […]
National Speech-Language Pathologist Day: Finnegan’s Story
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, […]
Cystic Fibrosis Awareness Month: Gray’s Story
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 […]
Rally for Reed – Reed’s Story
Discover Reed’s journey with Morquio syndrome, a rare genetic disorder that affects bone growth and calcification.
Living With Morquio A – Zane’s Story
At 7 months old, Zane Brooks was diagnosed with Morquio A, a genetic condition that causes an enzyme deficiency with bone, heart, vision, and hearing problems. After his older brother (age 2.5 at the time) was diagnosed with Morquio A, Zane underwent genetic testing where he found out he did as well. “As soon as we heard that Morquio may be the diagnosis, we researched online and quickly came to the conclusion that Nemours was the best place for treatment,” said Zane’s mother Kimberlee. “Between blood work and official diagnosis, we watched many medical presentations on YouTube from Dr. Mary Theroux and Dr. Will Mackenzie and knew Nemours was the safest place for our boys.” The day of Zane’s diagnosis, the Brooks reached out to Dr. Theroux and Colleen Ditro. “Within 24 hours we had kind, knowledgeable emails in response,” said Kimberlee. “I remember talking with Colleen days after diagnosis as she walked […]
OI Awareness Week: MJ’s Story
Before he was even born, MJ Strickland was diagnosed with Osteogenesis Imperfecta Type IV Severe (OI), a disease causing symptoms such as easily broken bones. Growing up with OI, MJ hasn’t always had the best experiences with doctors, nurses, etc. When he saw them, MJ was usually scared and in pain. When the Stricklands were trying to find quality orthopedic care for MJ with someone that is experienced with OI, they found Dr. Stall at Nemours Children’s Hospital, Florida. When MJ began working with Dr. Stall and his team, everything changed. “MJ has a special place in his heart for his Nemours team,” say the Stricklands. “Obviously, Dr. Stall is his bestest buddy. I’ve never seen him be so chummy with any of his medical team like he is with him. You can tell that all of MJ’s caregivers at Nemours have a genuine interest and concern for him. They […]
Thriving Through-OI- Aaron’s Story
Aaron, an 11-year-old boy with Bruck Syndrome, a type of Osteogenesis Imperfecta, underwent a major leg surgery and completed a three-month rehabilitation process.
Heart of a Warrior – Troy’s Story
After Troy was born, he was struggling to breathe. His mother Holli alerted the labor and delivery nurses, and they responded by checking his pulse, noticing that it was abnormal. Holli’s life was turned upside down when she was told that Troy had to be transferred out of state from Cape May, NJ to Nemours Children’s Hospital in Wilmington, Delaware to get the care that he would need. He was born with an interrupted aortic arch, a rare congenital heart defect that happens when the aorta doesn’t form completely. At just 6 days old, and due to his small size, Troy had a procedure to place bands around his pulmonary arteries and a stent the ductus arteriosus, to control the excessive amount of blood going to his lungs and to provide circulation to the lower body, performed by pediatric cardiac surgeon, Dr. Christian Pizarro. Then, at 6 months old, Dr. […]
A Marathon, Not a Sprint: Kaii’s Journey with Congenital Heart Disease
Kaii was diagnosed with a serious congenital heart defect while still in the womb. With the help of experts at Nemours Children’s Hospital in Delaware, Kaii is healthy and meeting his developmental milestones
Sticking the Landing: Saylor’s Story
While performing a vault in her gymnastics competition, 14-year-old Saylor suffered a serious injury that would flip her world upside down. After completing the vault, Saylor’s ankle was immediately hurt, and she was unable to place any weight on it. With another gymnastics competition quickly approaching, Saylor sought medical attention straight away. She visited numerous doctors and underwent several MRIs with no progress. During this time, the pain Saylor was experiencing in her foot began to spread to her leg and back. After visiting a local neurologist, Saylor was determined to have Chronic Regional Pain Syndrome (excess and prolonged pain and inflammation that follows an injury). It was then that Saylor was referred to Dr. Santana-Rojas at Nemours Children’s Health. After evaluation from Dr. Santana-Rojas and her team, it was determined that Saylor also had a severe case of Functional Neurologic Disorder. “Functional Neurological Disorder had completely removed me from […]
Then There Were Twins
After dating for ten years and recently married, Brandi and Brian Jones were ready to have children. They had always dreamed of having twins – hoping for a “one and done” pregnancy – although multiples were not part of their family history. Both knew it wouldn’t be easy. Brandi had been diagnosed with polycystic ovarian syndrome (PCOS) which could make it challenging to get pregnant. Even with the diagnosis of PCOS, they prayed not only to get pregnant but to get pregnant with twins. To assess her fertility, Brandi’s OB suggested she get an ovulation test. No one was more surprised than Brandi herself when the test revealed her ovulation levels were off the charts. Her OB confirmed she was pregnant with one baby. The couple was elated that God had answered their prayers. They soon began regular visits with their OB. At a routine ultrasound, two weeks later, Brian and […]
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