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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, […]

Journey’s Microtia Story – Mother’s Words

Emily Baez remembers being in the delivery room when she noticed that something was different about her newborn daughter’s ear. “You count toes, you count fingers, but you don’t think for a second to check any other body part… especially an ear,” she says.   Microtia is a rare birth defect in which the external ear is not completely developed. It affects about one in every 5,000-7,000 babies born annually. “When she was born, I didn’t know anything about it, I had never heard of microtia, so I started with social media first,” she says. This is when Emily became involved in The Ear Community online, searching hashtags and connecting with other affected families. “It actually helped make my grieving process a lot better.” After struggling to identify a health care provider that accepted their insurance, Emily found Nemours Children’s and instantly knew she was in the right place to […]

Hope of a Warrior – Sebastian’s Story

To read this in Spanish, click here! One day in May of 2022, Sebastian came home sad after school, causing me to worry about his unusual behavior as he is a very happy child. I asked Sebastian if something was wrong and if he was being bullied at school. He assured me he was just unusually exhausted. The following day, Sebastian was in the same down mood, but had a fever this time. I took Sebastian quickly to our local doctor, where he was diagnosed with a stomach bug and prescribed antibiotics. He eventually felt better, but not much time passed before the same symptoms returned. We went to another doctor who gave him the same diagnosis and prescribed more antibiotics. I wondered how it could be a stomach bug if he had no GI symptoms, but I followed the doctor’s advice. Rapid breathing was later added to Sebastian’s symptoms, […]

Esperanza de un Guerrero – La Historia de Sebastian

En mayo de 2022, Sebastián llego triste de la escuela. Estaba yo preocupada por él. Pensé que tal vez alguien era un bully, pero me aseguró que estaba inusualmente cansado. Al día siguiente era lo mismo, y tenía fiebre, así que lo llevé al médico que le diagnosticó una infección de estómago y le recetó antibióticos. Mejoró, pero no pasó mucho tiempo antes de que regresaran los mismos síntomas. Fuimos a otro médico que dijo que era lo mismo y nos recetó aún más antibióticos. Me pregunté cómo podría ser una infección del estómago si no tenía síntomas gastrointestinales, pero seguí lo que dijo el médico. Pero luego se agregó la respiración rápida a sus síntomas y supe que algo más estaba pasando, así que esta vez lo llevé al hospital. La respiración era tan rápida que me asustó. Pensaron que era bronquiolitis y prescribieron un tratamiento con nebulizador. Cuando […]

Aiden’s Story (Mother’s Words)

One evening shortly before Aiden’s 7th birthday, his father noticed Aiden was unable to speak, drooling, and had a facial droop with left sided weakness. I was working as a pediatric nurse at a community hospital, where he brought Aiden. We thought he was having a stroke.  He was transferred to the Emergency Department at Nemours Children’s Hospital, Delaware, where he had a full work up and was diagnosed with epilepsy and started on medications within 24 hours of arrival. Aiden tells us he had several episodes before anyone saw him and was very scared.  Fortunately, we don’t think he had many seizures before treatment. It still impacted his life, unfortunately limiting some of his activities, however he is definitely coming into his own and doing so well. He even wants to go into the medical field to be a surgeon. Epilepsy and the resulting seizures were a frequent part […]

Epilepsy Awareness – Chloe P’s Story

Meet Chloe. Chloe was diagnosed with Epilepsy as an infant after experiencing chronic seizures. Prior to receiving treatment at Nemours Children’s Health, Chloe found it difficult to participate in daily tasks such as school or social activities. “Stomach pains, shaking and an inability to focus were just a few things that would happen to me daily,” Chloe shares. With the expert care provided by our neurology team, Chloe was able to gain a better understanding of her condition, symptoms and began to navigate life, discovering her own path. “It is still sometimes surreal to know that I am less limited when it comes to having to do what someone would consider ‘normal.’ Go to school, be away on a vacation, go out shopping or just not have the constant worry of when and where a seizure may happen.” These days, Chloe is looking forward to her bright future as she […]

Page 7 of 10

Page 7 of 10

Page 7 of 10