MIANE SWART - PCDH19 Epilepsy

Please help us to fund the operation of Miane Swart's VNS implantation operation. 

Miane Swart is a 9-year-old (Turning 10) girl diagnosed with PCDH19 Epilepsy. Although she is almost 10, she has the brain activity of a ¾ year old, and with every seizure she gets set back more. 

PCDH19-epilepsy is a genetic form of epilepsy characterized by treatment-resistant epilepsy that begins in the first year of life, often accompanied by differences in development and features of autism spectrum disorder. PCDH19 Epilepsy is a rare epilepsy syndrome with early onset seizures, cognitive and sensory delays, and behavioural problems. It is caused by a change or mutation of the PCDH19 gene found on the X chromosome. The PCDH19 gene makes a protein (called protocadherin 19) which helps cells in the brain communicate.

Miane Swart’s Seizure onset started at age 7.5 months. She presented with prolonged, refractory clusters of focal and generalised seizures which resulted in respiratory arrest on multiple occasions and an episode of cardia...