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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 […]

A Few Months of Hard, For a Lifetime of Walking

At 18 months old, my physical therapist noticed I was showing early signs of a condition that needed attention as soon as possible. When my physical therapist suggested my family schedule an appointment with an orthopedic team, my family came to Nemours Children’s Hospital, Delaware; I was diagnosed with diplegic cerebral palsy. I’m now 12 years old and love my care team at Nemours. Dr. Peter Gabos and Dr. Jason Howard mapped out a plan for muscle lengthening and surgical femur/tibia reconstruction. The road to recovery was both a mental and physical battle that I will never forget. Some days it’s a challenge getting around with leg braces and very tiring, but I’m determined. All the doctors and physical therapists are so nice and helpful. They push you to do more than you thought you could, and I wouldn’t be where I am today without them. I’m hoping that I […]

Just Keep Dancing — Summer’s Story

Tammy noticed her daughter’s size difference from a young age. Summer was consistently smaller than her peers growing up, but her parents and pediatrician never suspected a serious issue. When Summer was about 7 years old, the family took a trip to Disney. Unlike their previous vacations, Tammy and Erik realized that Summer was struggling to keep up. This behavior was concerning because it was not the norm for their bubbly, energetic daughter. Unfortunately, Summer’s limp worsened, she experienced immense stiffness and hip pain, and she struggled to do what she loves most: dance. After an attempt at physical therapy, many x-rays and testing, Summer was diagnosed with Multiple Epiphyseal Dysplasia (MED) in August 2020. MED is a rare genetic disorder that effects the development of the joints in the legs. Her doctors recommended Nemours Children’s Hospital, Delaware to see orthopedic surgeon Dr. Will Mackenzie and orthogeneticist Dr. Mike Bober. […]

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, […]

Rare Disease Day: Reynolds’s Story (In Dad’s Words)

On December 8, 2017, my wife Ashley delivered our twins, Reynolds, and Campbell. She gets all the credit. I didn’t do any of the heavy lifting. We always knew that Baby A was larger than Baby B, but we didn’t know why. And we had no idea that there were going to be complications at birth. The boys were born at 36 weeks via C-sections, immediately whisked away and taken to the NICU. Reynolds was eventually transferred to another NICU, while Campbell just needed a little more time to grow. So, Reynolds and I left Ashley and Campbell to go to a children’s hospital in Little Rock, Arkansas, where we ultimately spent 103 days in that NICU. He had airway issues. He had cardiac issues. He had GI issues. And throughout that entire time in the NICU, doctors knew that there was some underlying reason causing these issues, but no […]

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 […]

Cochlear Implant Awareness: A’miyah’s Story

A’miyah was referred to the Cochlear Implant Program at Nemours Children’s Hospital, Florida, where she was evaluated, and was determined to be a candidate for cochlear implantation.

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 […]

Page 14 of 18

Page 14 of 18

Page 14 of 18