Finley (2004)

 

KIA ORA FROM AOTEAROA NEW ZEALAND

 

This my son Finlay, he presented at 4 months old with Infantile Spasms. 

He is now 19 years old, and just recently diagnosed with the gene mutation CACNA1e. 

Finlay lives with Cerebral Palsy, GDD, spasms, dystonia, epilepsy, dyskinesia, ataxic movement disorders & SPD. He’s my little cocktail of disabilities. A generally happy young man who loves to get out and about being sociable. To suddenly discover a gene that is responsible for all his symptoms is incredible. I am hoping from this group I can learn to understand more about the gene.