Aiden Dixon – Easter 2023

Shortly after his arrival into the world, Aiden was whisked away to the NICU. He was born with an array of complex health concerns, which led doctors to diagnose Aiden with 22q deletion syndrome (AKA DiGeorge syndrome or velocardiofacial syndrome). 22q deletion syndrome results from a small, missing part of chromosome 22. This deletion affects several body systems during development and can cause heart problems, kidney problems, a weak immune system, low calcium levels, hormone imbalances and speech problems, among other issues. Like up to 90% of children born with 22q deletion syndrome, Aiden struggled with nasal sounding speech. Because of this, it was hard for his parents to communicate with him and understand him, leading to frustration. After meeting with Dr. Kellogg and the rest of the 22q Team at Nemours, Aiden’s parents decided to pursue surgery to improve Aiden’s speech. When Aiden and his family arrived for his […]

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 […]

Meet these Nemours Children’s patients from Orlando and Delaware with life-threatening diagnoses. Together with their families and the Nemours Federal Affairs Team, our young advocates will meet with members of Congress in Washington, D.C.