Jenny is a 14 year old with a rapidly progressing paralysis. We are looking for other people like her in an effort to find treatment....
URGENT APPEAL FOR MEDICAL GUIDANCE ON PERPLEXING NEUROLOGICAL CASE OF JENNY Unusually Rapid decline from apparent lower motor neuron disease in a 14 year ild girl (Inset followed HPV vaccine in March 2007). Jenny is now Quadriplegic-- and in danger of further decline.
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Many world-class MDs have been consulted and many treatments tried
Immunoglobulin, prednisone (oral and pulse), plasma pheresis, and Cytoxan, have been tried based on the assumption of an autoimmune process, with no apparent effect.
A mitochondrial cocktail has been tried based on the assumption of a mitochondrial disorder.
Lithium and Rilutek have been tried based on the assumption of a neurodegenerative disease.
Jenny may have had certain pre-existing autoimmune and/or genetic vulnerabilities that rendered her susceptible to a catastrophic reaction to the HPV vaccine. These include an autoimmune skin disease (pityriasis lichenoides), a maternal grandmother who died of progressive supranuclear policy, and a maternal cousin with severe autism/seizures. Jenny also has only a single copy of the SMN-2 gene (but otherwise does not satisfy the preconditions for SMA).