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Nemours Children’s Health, Delaware Valley

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 […]

World Childhood Cancer Awareness Day: Ethan’s Story

Nine months ago, Annie and Ben Grayshan got the news no parents ever want to hear, “Your child has cancer.” Their son Ethan was 7 years old when recurring vomiting led to a visit with his pediatrician in April 2022. His doctor suspected a stomach bug. The vomiting persisted and Ethan was sent for allergy testing and then to a GI specialist. After starting antibiotics for a potential parasite, Ethan began to experience fatigue and headaches, common side effects of the antibiotics. But after a few days with no improvement, his parents took him to an ER where a CT scan showed a mass on Ethan’s brain. The Grayshans were then airlifted to the ER at Wolfson Children’s Hospital in Jacksonville. Within 48 hours he had undergone two brain surgeries. One to relieve the hydrocephalus, which had been causing his symptoms, and another to remove the tumor. A diagnosis of […]

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, […]

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 […]

Page 10 of 10

Page 10 of 10

Page 10 of 10