Elijah Gonzalez has been a “local” since birth, arriving on March 31, 2016 at UF Health Shands Children’s Hospital, and almost immediately transferring to the NICU after he experienced dropping oxygen levels and an erratic heart rate.
After his hospital stay, life at home for the Gonzalez family revolved around many follow-ups with seven different UF Health specialists including a developmental pediatrician, neurologist, neurosurgeon, geneticist, cardiologist, otolaryngologist, and ophthalmologist.
On March 23, 2017, eight days before his first birthday, Elijah was conclusively diagnosed with a rare genetic syndrome called Coffin-Siris Syndrome (CSS). This unique condition causes global developmental delays. At the time of his diagnosis, there were only 140 documented cases of CSS worldwide.
Elijah added four more specialists to his care team: a urologist, pulmonologist, audiologist, endocrinologist and an otolaryngologist.
“Having a son with an ultra-rare genetic syndrome can often take an extended time to diagnose. We were thankful for Dr. Gustavo Maegawa who started seeing Eli at a young age and helped him be properly diagnosed with Coffin-Siris Syndrome before his 1st birthday,” said Brooke Gonzalez, Elijah’s mother.
“We met Dr. Lance Governale (Elijah’s pediatric neurosurgeon) only six days before Eli had unexpected brain surgery for his hydrocephalus. He was friendly, explained things so we could understand but with plenty of detail, and made us feel like he was the best choice to perform the procedure,” Brooke said. ”Eli’s pediatrician, Dr. Maureen Novak, has also gone above and beyond to make herself readily available to answers any questions we have, no matter the time or day. She is a gem.”
“Knowing that we have a competent group of nurses and doctors caring for son has helped put our minds at ease. The doctors always take our concerns into consideration and they address the issues that we feel are important,” Brooke said.
Elijah currently attends Behavior Analysis Support Services where he receives Applied Behavioral Analysis therapy. He focuses on communication through picture exchange, following simple commands and self-care skills. Elijah also attends the ESE pre-K program where he works on socializing with his peers and cognitive activities. He loves to spend the rest of his day playing with his siblings, giving kisses, playing peekaboo and listening to music on Alexa.
Elijah’s family is thankful to look back and see the care Elijah received along with the support from Children’s Miracle Network Hospitals, including Dance Marathon at the University of Florida. After the surgeries and overnight assessments, Brooke and Ricardo understand how the money raised is utilized to access up-to-date equipment for his medical providers. The toys, games, and specialists that keep the children happy and entertained were a highlight for the family. Elijah’s family wants to personally thank all of the volunteers and donors who make families like theirs feel loved and supported through difficult times.
Interested in learning more about our CMN Ambassador Program? Visit giving.UFHealth.org/ambassadors.
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