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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. […]

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 […]

Nothing If Not Resilient – Kate’s Story

During her senior season of high school wresting, Kate felt something was off. When Kate’s right shoulder dislocated from her socket during a wrestling practice, pain started to occur. Kate dismissed it at first but soon, this pain became persistent during every practice and started to impact her everyday life.  Her shoulder constantly dislocated while out on the mat and it held her back from taking good shots against opponents. Kate continued to persist through the pain until she could no longer reach for something or close a car door without discomfort. “When I walked through the halls at school, I felt my shoulder being separated from the socket. It felt loose – that’s the only way I can describe it. It is a scary feeling when you know that your arm is not properly attached to your body, let alone wrestling with it,” says Kate. This injury had a […]

Olivia’s Story – Trisomy 18 Awareness Day

Brooke Renton’s life changed substantially when her daughter, Olivia, was born in March 2021, both in the physical sense (the family permanently relocated from Tallahassee to an Orlando suburb to be closer to Nemours Children’s Hospital, Florida) and in the emotional sense when she knew she would do anything for her sweet baby girl.   Born with a rare chromosomal condition called Trisomy 18 at a hospital in Tallahassee, Olivia had to be on a ventilator for the first 11 days of her life. The day before she was supposed to go home, doctors had to perform lifesaving CPR and place Olivia back on a ventilator. Olivia’s heart was “pouring blood into her lungs” due to a hole in her heart known as a ventricular septal defect. NICU doctors in Tallahassee told the family that Olivia would need a specialized center that performed advanced pediatric heart surgery to correct the issue. Due […]

Cerebral Palsy Awareness Month: Logan’s Story

During the first trimester of her pregnancy, Christine Miller learned her son, Logan, was diagnosed with congenital cytomegalovirus infection (CCMV). Christine was told that her son was dying in utero and would likely not survive the birth. Since the CCMV diagnosis, the Miller family has been in constant contact with the infectious disease department at Nemours Children’s Health. At 32 weeks pregnant, Christine underwent an emergency C-section and Logan was born, weighing just 3 pounds. Immediately following birth, multiple calcifications were discovered on Logan’s brain. At this time, Logan was also diagnosed with Cerebral Palsy. Fast forward 18 years, Logan and the Miller family still have a very close relationship with Nemours. In 2021, Logan had his first appointment with Dr. Shrader (Dr. Dabney followed Logan since birth). At first, Dr. Shrader was very pleased with Logan’s movement and progress from his previous hip surgeries. “But after talking with him […]

Raymond’s Story (In Mom’s Words)

My name is Alex Gaudlap. Also known as Raymond’s mom. Our journey with Nemours Children’s Health started in the fall of 2017 when we relocated back to New Jersey from Camp Lejeune, North Carolina due to Raymond not hitting developmental milestones appropriately. The doctors down South assured me Raymond was fine, but my motherly instinct told me he wasn’t. From the moment we stepped foot into Nemours Children’s, I felt like our concerns were listened to. Raymond’s first appointment at Nemours was with a neurologist in the Deptford location. Since we were new patients and basically starting from the beginning with tests, she ordered a routine EEG. We never would have thought that his first test would give us answers, but it did. Raymond was diagnosed with a rare form of epilepsy; that gave us some indication to why he had a global developmental delay. After receiving the epilepsy diagnosis, […]

Page 14 of 17

Page 14 of 17

Page 14 of 17