History 

Ronan began having grand mal (tonic-clonic) seizures at 5 weeks old. He spent his first two years in and out of the hospital for emergency treatment of his seizures and running blood tests, including a spinal tap, which were all normal. He began the ketogenic diet while he was in the hospital at 18 months old and continued that for 2.5 years. The diet eliminated his partial complex seizures that occurred in between the tonic-clonic seizures but did not affect the tonic-clonic, which required emergency treatment.

Today, at 19, he still has intermittent drop seizures and tonic-clonic seizures about every 7-14 days that require emergency med nasal sprays (Nayzilam and Valtoco). He takes a newer medication called Fycompa, which provides excellent seizure control but has devastating side effects at doses higher than 6 mg.

His mother, Kellymarie, tells us she went to naturalists and searched day and night for any “cure.” Ronan was on a spreadsheet of supplements for brain health and stability. In 2014, Ronan began taking high CBD hemp oil, which has helped with the intensity and frequency of his seizures but wasn’t the miracle cure they were hoping for. In 2017, when he was 11 years old, Ronan and his half-brother eventually had genome sequencing and were diagnosed with a pathogenic CACNA1A mutation. We were told it was the first case to be identified. Kellymarie was disappointed that the diagnosis didn’t lead to any new treatments or relief for Ronan’s seizures.

Kellymarie has raised Ronan herself, and he continues to amaze and surprise her. She writes, “He has always been a force of joy and reminds me of the one time he operates in…which is NOW!” Ronan is persistent and enjoys success in tasks and school. He is very smart and can “plan and scheme” when motivated by certain activities and toys he enjoys with passion.

Ronan is non-verbal, and his expressive behavior seems like a toddler developmentally; however, his receptive intelligence is very high. He takes in everything, notices details, and remembers for his use. He communicates with signs for “help” and “more” and supplements those with an iPad at school. He is always clear about his desires and getting his needs met. Kellymarie believes Ronan speaks the language of love.