At 13 months old, William was formally diagnosed with quadriplegic spastic cerebral palsy by the distinguished team at Nemours Children’s Hospital.
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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 […]
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.
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 […]
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, […]
Advocacy is Care – How a Nemours Resident is Making a Difference
Nemours joined the Children’s Hospital Association and children’s hospitals from across the country to advocate on Capitol Hill for continued federal support for the CHGME program.
It’s a Small World – Baby Lorenzo’s Story
At mom’s 20-week ultrasound, doctors discovered that baby Lorenzo had a cleft lip, creating anxiety for his expecting parents. “We didn’t know what to expect from the diagnosis, were scared of the unknown, and afraid our son would struggle with feeding,” said Lorenzo’s mom, Eneily. The Center for Fetal Care and the Division of Plastic and Craniofacial Surgery at Nemours Children’s Hospital, Florida worked together to comfort and reassure Lorenzo’s family. “Our experience with Nemours has been a true blessing to us. They took us by our hands and guided us,” said Eneily. “The care we received since we met Dr. Taboada, our Maternal Fetal Medicine specialist, has been excellent, and we were treated with love, patience, and respect. During each visit, Dr. Taboada would reassure us, saying, ‘Your son is perfect, and you will love his smile.’ She was right. I loved his first smile so much, and I love his […]
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 […]
Epilepsy Awareness Month- Chloe M’s Story (Mother’s Words)
On May 30th, 2021, Chloe was having a typical night playing with her toys. She was smiling and giggling like always, and suddenly she stopped her energetic pacing between toys and randomly fell to the floor. She became limp and stopped breathing. Her lips and feet turned purple right before she became conscious again. No one knew why this happened because she’d never experienced anything like it before. An ambulance arrived, and Chloe was taken to Nemours, where she was diagnosed with epilepsy following a second episode that occurred in the hospital. Despite a quick diagnosis, there was still a long road ahead to gain seizure control. Chloe’s days went from cheerful playing and adventures to constant seizures, which made her feel sick and exhausted. She was unmotivated to do anything. Her toys were barely touched, and she couldn’t sleep through the night without multiple seizures. Eating food became a […]
Palliative Care Month – Molly’s Story (Mother’s Words)
On her first day of kindergarten on September 20, 2010, Molly Katherine Dunne was a seemingly healthy girl until she collapsed as she arrived at school. She was taken to Nemours by ambulance. After some testing, she went home with plans to follow up on an out-patient basis. However, the next night her condition worsened so we returned to Nemours where she was admitted. After many tests, Molly was diagnosed with Pulmonary Hypertension. Things happened quickly and we knew little of what this diagnosis meant. Molly underwent a cardiac catheterization to help determine a treatment plan and next steps. While in the catheterization lab, she had some complications followed by a cardiac arrest. She was revived but was not stable so she was placed on ECMO also known as heart-lung bypass. Over the next few days, attempts to wean from ECMO were unsuccessful. Molly was transferred to another children’s hospital […]
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