Ireland's Story

Ireland is a seven year old bright and loving little girl who lives with her parents and younger sister. She is a Paw Patrol fanatic who enjoys dance parties and carnival rides.

When Ireland was 6 months old, she had her first generalized tonic clonic seizure, which led to an epilepsy diagnosis and genetic testing. The testing reveled a CACNA1A pathogenic variant. Ireland presents with cerebellar ataxia, a convulsive seizure disorder with status epilepticus, developmental delays, apraxia of speech, hemiplegic migraine, and autism. Her biggest challenge at this time is poor seizure control, despite trying a long list of AEDs, the Modified Atkins Diet and Epidiolex (CBD). Ireland has been intubated 9 times for status epilepticus and spent countless days in ICU recovering from these horrific events.

Ireland works very hard in PT, OT, Speech and ABA therapies. She is able to walk, hop, climb, feed herself, and says about 150 words or word approximations. She always makes developmental progress, despite setbacks caused by seizures. She has a supportive village of family and friends who love her very much.