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Pediatric Neurology Patient Stories

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.

Caring for Matthew: Managing a Very Rare Disease

April 03, 2025 – Matthew was diagnosed with Phelan-McDermid Syndrome (PMS), a rare genetic disorder that affects development, speech, and cognitive ability, and requires extensive medical care and round-the-clock support. Despite his challenges, Matthew radiates love and joy, and his family is advocating for increased awareness of PMS while seeking potential treatments for the condition.

Lily takes some steps forward with the help of her physical therapist.

Lily Shines a Light on the Importance of Early Detection of Neuromotor Delays

March 12, 2025 – Lily, age 2 ½, is walking independently and making remarkable progress, thanks to rehabilitative intervention at Nicklaus Children’s Hospital and an early diagnosis of cerebral palsy.

Matthew’s Epilepsy Success Story

January 04, 2021 – My son, Matthew Reyes, was diagnosed with epilepsy when he was three and a half months old. To control his seizures, Matthew tried 11 different medications and was placed on the ketogenic diet. Unfortunately, none were successful in minimizing his seizures on a daily basis. This is called intractable epilepsy.

Patient of the Month: Gianna

August 01, 2019 – After noticing that her daughter was unable to crawl, stand, or do the things her friend's children were doing at six months of age, Idalmis decided that it was time to seek help. Sure enough, after some consultations and genetic testing, Idalmis' gut feeling was right.

Lucas’ Success Story

January 15, 2018 – August 15, 2017 was the day my son Lucas was admitted to Nicklaus Children’s Hospital for purposes of treating uncontrollable seizures. After being admitted at a previous children’s hospital on three consecutive occasions and many EEGs later, we were referred to Nicklaus Children’s by a neurologist.

Patient of the Month: Frankie

December 04, 2017 – What was supposed to be a fun day for Frankie and his sister with their uncle quickly took an unexpected and tragic turn. Frankie was kicked in the head by a horse at the ranch they were visiting, and he suffered a traumatic brain injury. 

Patient of the Month: Astry

October 04, 2016 – After Astry was born, her parents noticed that she wasn't progressing as babies typically do. She wasn't able to lift her head and she showed a lot of muscle weakness. Her pediatrician recommended they take her to see a neurologist, and so Astry's parents brought her to Nicklaus Children's Hospital.