Printed with the kind permission of Jackson's Mother, Jennifer and his IDPLO\«
Jackson Stormes:
A Difficult and A mazing Journey
L iving with D ravet Syndrome and all the complications
In 2009, Jackson was diagnosed with Dravet
Syndrome after having genetic testing done
for the SCN1A mutation. Prior to the
genetic testing, Jaxs had a diagnosis of
"medically
refractory,
idiopathic,
cryptogenic epilepsy" .
This is a fancy way for the doctors to say
that they "do not know what is causing his
seizures, nor do they know how to treat his
seizures because they are not responding to
the medications or to other medical
interventions".
Jackson has suffered from these seizures
since October 21, 1999 (4.5 months old) and
his second seizu ɔ