Precision Medicine Patient Stories

Read inspiring stories of hope from patients and families treated at Nicklaus Children's Hospital.

Have your own inspiring patient story to share? If you’d like to share your Nicklaus Children's story to inspire hope, and help other families find answers to questions they’re seeking for their child, please contact us at: info@nicklaushealth.org.

Hope and Healing for Noah

Soon after Noah's birth at 33 weeks, the tiny neonate was struggling with a persistent high bilirubin count. He underwent numerous tests at the hospital where he was born to try to determine the cause. High bilirubin is common among premature babies, yet standard treatments did not help Noah, suggesting an unusual diagnosis. Read this story.

Happy News for Patrick

Maria and her husband, Brian learned that their son Patrick had a gene/variant of unclear significance for a rare genetic disorder called adrenoleukodystrophy (ALD) which causes damage to nerve cells. What remained unknown was whether Patrick had the more serious form of the disorder – a condition that could end his life before he reached adulthood. Read this story.

A Bright Future for Cassian Thanks to Genomic Testing

Cassian experienced persistent pulmonary hypertension soon after he was born. Doctors transferred the ill newborn to Nicklaus Children’s Pediatric Intensive Care Unit to learn a genetic reason for his illness. Nicklaus Children’s is one of only two hospitals in Florida offering rapid whole genome sequencing (rWGS). Due to this, Cassian received an early diagnosis and did not experience the severe consequences associated with Wilson’s disease. Read this story.

Julen Smiles

Three days in the hospital, 44 medical appointments, numerous X-rays and ultrasounds, two urinalyses, three blood draws, a salivagram and a swallow study. This was the medical agenda for baby Julen in May 2019, the last full month he was able to be mostly at home with his family. After that, the little boy’s condition deteriorated and he was hospitalized for most of the rest of his days. Read this story.