Jaxon is a 7-year-old boy who is suffering from SSPE just like Maxi.
He lives in Port Orchard, Washington State, USA. In the summer of 2007, just over
a year after Jaxon showing first symptoms of the desease, his parents and an
outstanding group of friends and relatives got together and formed a non-profit
organization that was named Jaxon’s Cure. In July of 2007 it was incorporated
in the State of Washington.
Jaxon's Cure purpose is to find a cure for Jaxon and other children worldwide with
SSPE by directing funds raised towards research, cure development and awareness
on all issues related to SSPE.
Maxi's family is in close contact with Jaxon's parents. We exchange information and
experiences, especially on alternative or innovative treatment methods and function
as the "bridgehead" to the SSPE organization in Istanbul, Turkey.
22 Nov 2008:
Following an unexpected acute deterioration of his condition, Jaxon passed away
on October 6, 2008. He was no older than 8 years...
Jaxon's family is in our thoughts and prayers. In a desperate effort to somehow help
saving Jaxon's life, we had been in close touch during Jaxon's last days to establish
contacts to the SSPE specialists in Turkey and exchange all available information.
Unfortunately too late...
SSPE association "SSPEDERNEGI" Istanbul, Turkey
Mission statement:
To find a cure for SSPE (Subacute Sclerosing Panencephalitis) to enable the state
of Turkey to research the disease, to find and record the patients both in Turkey and
worldwide. By putting together all these findings enable the pharmaceutical companies
to produce medicines against SSPE.